Every mother’s nightmare…

What has the United States become when we separate children from their parents? That is the question I ask myself today. I’ve tweeted about some appalling actions of the Trump Administration and the Republican-led House and Senate before–(like threatening people with cancer and/or disabilities/pre-existing conditions with no health insurance). I’ve been trying to curb my anxiety and despair at having a President that lies on a regular basis, would have an affair during his wife’s pregnancy and who thinks Putin and Kim Jong-un (murderers of thousands) are “great guys.”

Republican political strategist Steve Schmidt said on NPR June 17, 2018,

“Watching the Republican Party’s degeneracy, it’s cravenness. It’s moral rot and corruption. The embrace of pedophile candidates like Roy Moore, the fact that there are legitimate Nazis running under Republican banners in races across the country and the inability of, really, a single member to muster the courage to stand up and, with regard to Donald Trump’s illiberalism, to say, excuse me, sir, this is the United States of America is a tragedy in my view.”

Reaching a new low, the administration that has no moral compass is separating families. On Father’s Day, when Representatives were finally allowed to see and speak to detainees at the Immigration and Customs Enforcement detention facility in Elizabeth, N.J, they said,

“What we saw here today was heartbreaking. Parents are being held prisoner inside, literally crying to us to be reunited with their families,” the lawmakers said, in a statement, after the visit. “…Trump and Sessions say they are following laws. That is a lie. There are no laws requiring families to be ripped apart….Trump claims Democrats are to blame for families being broken up. That is a lie. Republicans control every branch of government.”

I’m calling on mothers around the country to do what I am doing. Take a stand. Write about this.

There’s a photo of a two year old girl being separated from her mother that has gone viral.  I remember my son at two. He was inconsolable at being separated from me. Any mother who sees this photo, thinks of their own children and realizes that these little ones are being “detained” and may be sent to “foster homes?” should be as outraged as I am.  To forcibly separate babies from moms and dads is extremely detrimental to these children’s health, both physical and mental, and to their safety.

 

 

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Meredith Hurston, #HCHLITSS Guest September 17, 2015

We are very excited to have as our guest on #HCHLITSS Thursday September 17, 2015 Meredith Hurston. Here is a short bio.

#hchlitssMeredith Hurston is a native of Flint, MI and finished her undergraduate studies at The University of Michigan-Flint. After completing a graduate degree in healthcare administration, she now works at the nation’s top rated hospital in Baltimore, Maryland. She is a board certified Clinical Laboratory Scientist currently focusing her efforts on healthcare quality and patient safety. Her reputation as a passionate, no-nonsense advocate for patients and their safety has created a buzz in the medical community. Driven by faith and dedication to closing the gap in healthcare disparities, Meredith serves as an ePatient Advisor to the Stanford Medicine X program. Meredith believes in strengthening the health literacy of patients, families and consumers to improve their confidence when speaking to medical professionals. This key element will allow more patients to take an active role in decision-making for their health. She has committed the use of her voice to make that happen. She is the host of Take Charge of Your Own Health podcast and curates The Empowered Mocha Patient, an online health resource especially for African-Americans.

She will be facilitating a workshop at the Stanford Medicine X |Ed conference, which precedes MedX. Her workshop is designed for healthcare students and educators and will teach strategies for patient engagement.

Please join us and learn more. Use http://www.tchat.io/rooms/hchlitss!

#HCHLITSS Chat Thursday February 26: Trends Redefining Healthcare This Year

An interesting article was posted over at Fortune.com last month. It discussed “5 trends that will redefine healthcare experience in 2015.”

http://fortune.com/2015/01/14/5-trends-that-will-redefine-your-healthcare-experience-in-2015/

None of these topic areas are brand new ideas. In fact, we’ve discussed several of them during previous #HCHLITSS chats. The idea here is that these areas are beginning to reach a critical mass such that they are beginning to impact the ways in which we deliver and purchase health care in such meaningful ways at both the individual and system level, their impact can no longer be overlooked. Take a look at these trends and be prepared tonight to tell us:

1) Which of these trends do you think has truly become/is becoming a new standard in the way care is delivered?
2) Which of these trends are still a fad/ their time has not yet come?
3) Which of these trends has the greatest impact on your life, your health?

From The Stars To The Turkey

thankfulness

Right after the Big Bang there was a long period of darkness with no stars–in fact, about 400 million years of darkness. Then clumps of hydrogen collapsed into the first stars and galaxies.

galaxiesIn the process of fusion, the stars produced helium and glowed, lighting the universe. As those stars aged, and nuclear fusion continued, they formed much heavier elements, like oxygen, nitrogen and carbon. As supernovas, some stars ejected these elements into the rest of space.

The universe was born 13.8 billion years ago and our solar system around 4.6 billion years ago. During the time between the two birthdays, many stars pushed out the building blocks of planets, atmospheres, other stars and life.

In fact, every one of us is made from the atoms created by those stars. “We’re made of star stuff,” Carl Sagan famously stated in an episode of “Cosmos.” Plants, earthriseapollo8animals and people are all connected through the stars and starlight.

This knowledge makes Albert Schweitzer’s quote even more compelling.

At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.

As we come together in Thanksgiving, let us remember our beginnings in the creation of light. Let us also thank others for the help they give us to rekindle our inner light and try our best to be the person who helps light the way for others.

Happy Thanksgiving.

On Losing One’s Bladder

StomaCloak

What happens when the physician becomes the patient? What happens when the physician is a urologist and the disease he has, is something he’s treated before?

Joseph Salisz can explain what happens because he’s been there. He describes his profession, “I fix plumbing problems.” And the “ironic twist,” as he puts it, is that he had a “plumbing problem.”

On Being a Physician

cropped dr salisz/h1>One Sunday evening in 2010 he got a phone call that transformed him from a confident surgeon to a patient. “My family doctor called me and said I have a blood test problem…” His doctor told him that his PSA was 28. Prostate Specific Antigen (PSA) is a test for prostate cancer. In 2009, Joe’s PSA was 1.6. His reaction was, “I don’t believe it, let’s repeat it.”

“Surgeons are a special breed of physician….” Joe explains. “You…pay me to take things out, things that you are accustomed to…you…pay me to sew you back up….” Because of this trusting relationship, “I have to be in charge,” Joe continues, “…my confidence sometimes comes off as arrogance but who wants an unconfident surgeon?” He shares a surgeon’s adage, “A surgeon should be confident, have steady hands and have clean fingernails.”

His demand to repeat the PSA test was the last time he was in charge of his “plumbing problem.” The repeated PSA was 29. A biopsy confirmed prostate cancer that had invaded his bladder.

On Becoming a Patient

Joe found himself in a hospital linked to an IV pole, catheterized and prepped for surgery to remove his prostate and bladder. “This is a weird position,” he relates, “I’ve never not been in control. I’ve been doing urology for 22 years and prostate cancer was an illness I was accustomed to treating.”

Joe’s physician-to-patient metamorphosis included the removal of an essential body part—the bladder. The bladder is the receptacle for urine in your body. “You need your bladder to get urine outside of your body,” Joe explains. So what replaces your bladder when you no longer have it?–A stoma and a bag.

Joe had what is called a urostomy. The colon and the ileum (or small intestines) are two other organs in the body that when diseased may have to be partially removed and intestinal waste products rerouted: these are called colostomy and ileostomy respectively. In many of these operations, an opening is made in the abdomen for the waste products of the body, (urine for urostomy and stool for colostomy and ileostomy) to leave the body. The opening is called a stoma and the person’s waste products come out of the stoma and go into a plastic bag that attaches directly to the skin around the stoma.
On Being An Ostomate

Needless to say, it is transformative, and not in a good way. “What a body change! All of a sudden I go from a nice svelte surgeon with great abs to somebody with a hole through my abs and something red sticking out…and that’s not normal.” Research on the quality of life for ostomates (people with ostomies) finds that ostomates are likely to have a poor body image. In addition, they don’t feel confident, they avoid intimacy; they worry about leaks and odors, and basically drop out of the mainstream.

There are 100,000 new ostomy patients in the United States per year ranging in age from newborns to elders.

Joseph came home with a plastic bag attached to his abdomen and soon experienced this. “How can I be a physician? How will I be me?” Just one example of the impact of the body change on Joe was that he didn’t feel comfortable changing in the gym. He hated the sensation of a bag bouncing around on his abdomen so he stopped running. He lost confidence in himself.

Joe describes the bags this way. “These bags are sweaty…they feel wet, you don’t know if you are leaking…they’re scrunchy…they make a crazy sound when people hug you…and I needed a lot of hugs at the time…they’re odorous…and they are unsightly, they make a bulge in your clothes….”

Joe readily describes the support that he receives on a continuous basis from his family and his community. His wife started looking online for products that would cover the bag and make it easier for him to get back to his “old self.” Unfortunately the covers she found just didn’t do the job.

On Healing a Healer

Luckily Joe lives in western Michigan, a manufacturing center of the country. He brought his problem to a friend in the textile business whose specialty is material that is carbon impregnated. When the carbon is activated in the cloth, it adsorbs odors. It also wicks away the sweat and moisture that is trapped around the bag, reducing the risk of skin breakdown from bacterial or yeast infections.

So with a group of friends, Joe transformed from patient to an e-patient (engaged, enabled, empowered) inventor—the result is StomaCloak.

beige and black StomaCloak new photo 2014StomaCloak is an incredible product that is changing lives. Here are some comments Joe has received.

“I really like my new StomaCloak. It is especially nice after swimming or bathing. It somehow wicks away the moisture as well as protecting my skin. It fits over the whole pouch and is very comfortable. It also gives me a secure feeling in case I might have a leak, so I even wear it to bed.”

“So I purchased one last week…I do not have a pronounced smell problem, but this Cloak seems to regulate the temperature and I do no longer get that cold wet feeling, thinking I have a leak, but a constant warmth. I am ordering two more of the StomaCloaks today…”

“Right now StomaCloak is doing everything that it is suppose to be doing. I’m an Ileostomy and have tried every filter that the ostomy manufactures have offered and can say that I get two days wear time before my clothes start getting soiled. With this now I get 7 days wear time out of my pouch. So far this is working out great.”

Perhaps Joe’s favorite is a letter he recently received from a mother of a 16-year-old teenager. He had a colostomy for Inflammatory Bowel Disease and was feeling awkward about his stoma. His mother bought him a StomaCloak and with the StomaCloak, she wrote, “he’s been confident enough to ask a girl to the prom!”

Now that’s what StomaCloak is all about.

The content of this post is based on email correspondence and on a TEDX presentation at https://www.youtube.com/watch?v=jetnnOwcSrI with permission from the presenter.

Kathleen writes at Medivizor’s blog, Health Communication and Health Advocacy, The #HCHLITSS Tweetchat and for Legacy DNA Marketing Group.
First posted on LinkedIn

6 Reality Checks: The Bootless Have No Bootstraps

barefeet2

“…it is a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps.” –ML King Jr

I don’t know why I’m surprised with comments that prove many people don’t know how to walk in someone else’s shoes. After sharing about the problem of paying for long term care for adults with severe autism on Twitter–

“Paying for LTC 4 adult children w/autism requires a Medicaid waiver. Many states have enormously long wait lists”

someone (in a series of tweets) tweeted this.

“That’s ridiculous. Parents were good enough before18 but not after???? And aren’t parents responsible even after…” [second tweet] “Wouldn’t it be our job to make sure they were taken care of??? Same as if they were minors?” [third tweet] “Parents adjust financially as they need to. We always have.” [fourth tweet] “& we haven’t had to deal with the what if…..only the which one.”

Reality Check #1

So let’s do a reality check here. First, many people with severe autism cannot communicate at all. Second, some people with severe autism wear diapers and must be changed as adults. Third, most people with severe autism cannot work. Fourth,

“Parents don’t live forever & that is the sad fact. The situation 4 some families is dire.” [second tweet] “What do parents do if they are poor? What do they do if no one will take them (the adult children)?”

Reality Check #2

I also directed the person to a post I wrote after doing research for a client on what is available for people with severe autism. The reality is this. It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person. If that isn’t scary, just read on.

Reality Check #3

reality-check200x192Locating residential homes that are specifically for autism is challenging. One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, or NARPAA. It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.” There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Enter Dr. Ruth Sullivan

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan. She is a world renowned authority on autism, having founded the National Autism Society as well as founding and directing the Autism Services Center. She also wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA). This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities. This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this. Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers ends upon graduation from high school. Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Reality Check #4

Even though IDEA mandates services during school, many parents have to fight for those services. Exhausted from this effort, they often are not prepared for the transition from high school. It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism. Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Reality Check #5

There is a significant shortage of residential services for autism in the United States. In fact, even staff at some residential centers for autism do not have to have the kind of specialized training required by public schools for special education teachers working with children with autism.

Many of those who need residential care end up in group homes and centers that are not specific to autism. Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis), most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism. Unfortunately, these behaviors are likely to be dealt with in a punitive manner, which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered. For example, lifelong provision of services is a key difference among facilities. When first reviewing organizations, it was troubling to discover that some facilities require clients to work. If they are too old or unable to work, they are not allowed to stay on in the community.

Reality Check #6

Talking to several of the directors of these residential programs was eye opening. The only real source of funds for autism is Medicaid and that is only through a limited program called the Home and Community-Based (HCB) Residential Waiver. Having Medicaid doesn’t automatically mean you have the Waiver. The Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement.

Thirty-five states require insurance companies to provide some coverage of critical autism therapies for both children and adults. Twenty-three of these states require coverage of autism treatment costs the other twelve require limited support.

Conclusions

“Before you act, listen.
Before you react, think…
Before you criticize, wait…
Before you quit, try.” –William Arthur Ward

It’s time to stop knee-jerk reactions to Government spending on those who are poor or defenseless.

Very few parents in the US can afford between $75,000 to $200,000 per year to care for autistic children and adults.

First posted on LinkedIn

Children and adults with severe autism are people. Their parents do not live forever. Leaving them to live or die on the streets is cruelty beyond measure.

Marijuana and Brain Development

How does one take the leap from this clip to marijuana use?  Crush’s description of Marlin’s journey through the “jellies” seems to be  the view of many  toward marijuana.  Laughing off “smoking a j” during high school and college with I “had some serious thrill issues.”

Thrill issues, risk taking or sensation-seeking are all attributes associated with the period between childhood and adolescence.  Usually risk-taking decreases between adolescence and adulthood.  (Although there are some people who are perpetual thrill seekers but they are in the minority.) What’s going on during this time period?

One review of the literature by Steinberg (2008) explains risk-taking as a feature of brain development.  Specifically risk-taking behavior occurs because of dramatic changes around the time of puberty in the dopaminergic system of the brain.  What’s this mean?  There are nerve cells in the mid brain called dopaminergic neurons that produce dopamine.  Dopamine is a chemical that controls voluntary muscle movement as well as mood, stress or experience of rewards, in fact quite an array of behaviors, including addiction.

Research suggests that the brain is not fully developed until age 25 (Lenroot, 2006). Between adolescence and adulthood (the fully developed brain) risk-taking behavior slows down as the dopamine system settles down.  This allows adults to self-regulate that is, think this through, control themselves, make considered choices.

Development is at a different pace for different people but these 15 or so years are important because of heightened vulnerability to recklessness.

So why have we taken this trip?  Because of a  study published this August in the Proceedings of the National Academy of Sciences.  This longitudinal study ,done in New Zealand, followed individuals from birth until they were 38 years old.  Participants took neuropsychological tests at ages 13 and again at age 38.  They were interviewed about their use of marijuana at ages 18, 21, 26, 32 and 38.

The findings were striking.  Those who used marijuana regularly, especially those who started using it as adolescents, showed a significant decline in IQ.  Additionally, family and close friends noticed the difference in their cognitive function.

So, where does this study take us?  Supporters of marijuana for casual use might say that IQ tests are questionable tools to base decisions on whether or not to use marijuana.  Others might point to a variety of other factors that might reduce people’s IQ, from environmental exposures to television or video gaming.

Though marijuana is an incredibly useful prescribed medication, this study may cause one to pause and wonder about it’s recreational use, especially during adolescence.  In the end, it is no laughing matter.

Kuehn, B. (2012).Marijuana Use Starting in Youth Linked to IQ Loss. JAMA.308(12):1196.

Lenroot, R. (2006).Brain development in children and adolescents: insights from anatomical magnetic resonance imaging. Neuroscience Biobehav Review 30(6):718-29.

Steinberg, L. (2008) A Social Neuroscience Perspective on Adolescent Risk-Taking
Developmental Review. 28(1): 78–106.

The Change We Need: Avoiding Harm in Hospitals

I first posted this on OccupyHealthcare September 10,2012.

The Institute of Medicine (IOM) recently published a substantial report on the healthcare system in the US.  According to the report, in the US 1/3 of patients are currently harmed during their stay at a hospital.  These harms are called Hospital Acquired Conditions (HACs).

In a 2012 article in the Journal of Health Care Finance, Nero, Lipp and Callahan analyzed 2007-2008 patient data from the New York State Department of Health’s Statewide Planning and Research Cooperative System.  Of the 4,853,900 patients whose discharge information was included in the analysis, the most frequent hospital acquired conditions was bedsores, also known as pressure sores or the technical name “decubitus ulcers.”  Their annual cost estimate for New York alone was nearly $680 million and 376,546 days of hospital care.

For the US, estimates of cost range between $6 and $15 billion annually (Markova & Mostow, 2012).  The costs in human suffering are also significant.  When Ailman et al (1999) conducted a comparison of patients who developed bedsores and those who had not; they found significant increases in hospital-acquired infections (45.9% vs 20.1%) and other complications.  Hospital costs and length of stay were greater for those who developed these ulcers.

My interest in decubiti is personal.  In the 1980’s and 1990’s my mother worked part-time in a hospital in North Carolina in quality control.  When researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that patients were getting in the hospital, that was preventable, that was painful and could be life threatening.  This was the problem of bedsores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, in 1999, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training had been discontinued, the nursing staff did not know how to prevent this ulcer from occurring, nor did they know how to treat it. Thankfully, my mother was still able to help my sisters and I find the skin care expert that had been hired previously.  Through that expert, we got the type of dressing that mother needed to promote healing.  We took over, turning mother, changing her dressing, giving her bed baths and doing “bedpan duty”.  We were there with her, night and day, for two months.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, despite her cancer.  We showed the nurses what we were doing and asked if they could use the dressing on the man next door.  Sadly, we were told that if his physician did not order the dressing, there was nothing that could be done for him.

The name of the IOM’s report is “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  In my view, continuously learning healthcare means that just because there is improvement in quality, efforts to maintain quality control cannot be stopped.  It means continuous training and monitoring.  It means dealing with this very real problem.  Getting bedsores is preventable.  Patients in hospitals and nursing homes do not have to acquire these life-threatening ulcers.  But it requires awareness, intense devotion, continuous monitoring and education.  It also requires enough people.  People who are willing and able to do the physical work, people who have the energy, time and devotion to care and people in power who remember that the patient in that hospital bed could be their mother, sister, brother, father, child, aunt, uncle, grandparent or friend.  Patient safety must be at the center of all the care we provide and it is imperative that we actively work to prevent avoidable complications in care.

References:

Ailman, R., Goode, P., Burst, N., Bartolucci, A., & Thomas, D. (1999). Pressure ulcers, hospital complications, and disease severity: impact on hospital costs and length of stay. Advances in Wound Care. 12(1):22-30.

Markova, A. & Mostow, E. (2012).  US skin disease assessment: ulcer and wound care.Dermatological Clinics. 30(1):107-11, ix.

Nero, D., Lipp, M. & Callahan, M. (2012). The financial impact of hospital-acquired conditions.Journal of Health Care Finance. 38(3):40-9.

“It’s the Neighborhood, St***d”

“Life is like riding a bicycle. To keep your balance, you must keep moving.” Albert Einstein

A study just published in the September 20 issue of Science gives a whole new meaning to moving.  The study comes from the data of over 4,500 low income families who participated in a large-scale randomized social experiment called Moving to Opportunity.   The poor neighborhoods were in 5 cities, Baltimore, Boston, Chicago, Los Angeles and New York.     Moving to Opportunity used a random lottery to offer vouchers to around 2,000 extremely disadvantaged families who were living in distressed public housing projects .  These vouchers  allowed them to move to mixed income neighborhoods, that is, better neighborhoods.  The study was done to determine the impact of where one lives on one’s health.   The research published in Science is based on comparative data of those adults who moved and those that stayed in the neighborhood.  It is longitudinal data, data obtained 10 to 15 years after the move took place.

Most of the households in the study were headed by African-American or Hispanic women, most of whom had not completed high school.   According to participants, their motivation for moving was to find better schools, have better apartments and get away from gangs.

Findings from the study are interesting.  First, those who moved to better neighborhoods increased their physical and psychological health. They had lower rates of diabetes, obesity, anxiety, depression and stress than those who stayed.

In addition, movers in this study had gains in happiness and well-being compared to those who stayed.  In fact, although the movers did not see any income increases, they experienced the same gains in degree of happiness as would be found in people who have $13,000 family income gain.

Poverty and poor surrounding take a toll on people. Researchers have surmised that  in the the poor are severely impacted by decision fatigue.    Abhijit Banerjee and Esther Duflo note in their book Poor Economics, decision fatigues cost for the poor.

There are”…many things that…[those who are not poor]  take as given. We live in houses where clean water gets piped in — we do not need to remember to add Chlorine to the water supply every morning. The sewage goes away on its own — we do not actually know how. We can (mostly) trust our doctors to do the best they can and can trust the public health system to figure out what we should and should not do. … And perhaps most important, most of us do not have to worry where our next meal will come from. In other words, we rarely need to draw upon our limited endowment of self-control and decisiveness, while the poor are constantly being required to do so.”

In other words, making difficult decision after difficult decision takes a  toll on mental energy.   The more choices one has to make through the day, the harder each one decision becomes for the brain.  As decision fatigue sets in the brain looks for shortcuts: either becoming reckless,  impulsive, or making no decision at all and doing nothing.

Racial neighborhood segregation is decreasing in the US but economic segregation is increasing.  The findings in Science point to health improvements due to decent, safe housing.   When in stressful, difficult situations–like living in unsafe neighborhoods–much mental energy is used.  Important decisions based on health recommendations, like healthy eating or doing physical activity,  for personal or family health, are either neglected or ignored.  In other words, perhaps when the movers in the study didn’t have to decide the best time to go to the grocery store based on when gangs were roaming the neighborhood, they had more mental energy to make the “healthy” choices at grocery stores that are recommended.

No matter the mechanisms, one thing is certain from the research on Moving to Opportunity:  moving from extremely poor, violent neighborhoods to  better neighborhoods improves health.  Shouldn’t making neighborhoods safer and easier to live in be a national public health priority?

 

How An Adult With Low Literacy Experiences the Healthcare System according to Peter Morrison

The term “health literacy” has been around for at least 15 years but headway in understanding it and implementing tools to address it is relatively recent.  Low health literacy occurs in those who are extremely well-educated as well as those who have low literacy.

If you are entering the US healthcare system with low health literacy, you will have trouble.  But your troubles increase exponentially when you also have low literacy.  That’s why Peter Morrison collaborates with people with low literacy to create health literacy interventions.

Since 2009, Morrison has been Director of Health Literacy Programming at the Literacy Coalition of Central Texas.  There he works with English Language Learners and those with low literacy, as well as national leaders to develop a suite of health literacy services with proven efficacy throughout the state of Texas.

Asked to explain how a person with low literacy experiences the healthcare system, Morrison gives his audience a reading test.

“First, kcehc the egral and rewol rotaidar sesoh along with the rellams retemaid sesoh, hcihw run morf the engine eht llawerif.  Inspect hcae esoh along its eritne length, and ecalper any esoh that is dekcarc, nellows, or swohs signs of noitaroireted.  If you ezeeuqs the esoh, skcarc may emoceb erom apparent. Make sure the esoh snoitcennoc are tight.”

“Anyone want to take a stab at what this passage is about?” he asks.

Very few of his audience respond.  And he is not surprised.  “Most of you probably couldn’t answer the question. Some of you probably got frustrated. Some of you didn’t really even try to read it.   This is how it feels to be low literate. Even if you broke the code (words spelled backwards) you likely couldn’t answer questions about it.”

He describes the experience further, “When we’re concentrating on individual words, we can’t comprehend sentences and paragraphs. Imagine an informed consent document, “I hereby authorize…blah blah blah.” You’ve lost the low lit person already.  They’re stuck on the words “hereby” and “authorize,” so when they complete the sentence, they haven’t gained comprehension.”

Patients with low health literacy often try to disguise or hide their struggles by saying things like “I forgot my glasses, I will read it later.”  These are red flags or cues for health care providers, Morrison notes.  “One of the biggest barriers faced by low Health Literacy patients is shame of not understanding.  This inhibits question asking and promotes head nodding.”

Texas’ large Hispanic/Latino population shapes his work.   “Culture plays a big role with English Language Learning patients, but often feelings of shame for not understanding are the same.”  He does advise healthcare providers to “be careful assuming translation is enough. People don’t understand “medicalese “in English and patients don’t understand it in other languages either.”

Morrison’s  leadership in the field of health literacy is evident in several instances, including a collaboration request by Joint Commission on a nation-wide hospital assessment project.  Research validation is part of the success of health literacy interventions he has developed.  He does pre- and post- evaluations of workshops, measuring increased knowledge and intent to change behavior. “For instance, a mobile dental van wants their consent form redone. They send forms home to parents of school kids. We’ll look at return rate of consent forms and completion rate of those returned forms.”

Indeed, his expertise has been recognized and rewarded by being selected as one of ten nation-wide American Medical Association consultants for the Communication Climate Assessment Toolkit (CCAT).  His enthusiasm  for the Toolkit is obvious, “The C-CAT rules! It was developed by the American Medical Association and endorsed by the National Quality Forum. It measures 9 discreet domains of effective communication.  This instrument puts hard metrics behind the soft issue of communication. It helps agencies target Quality Improvement Interventions.”
As a strategy for health care providers, Morrison says that Teach-back is the most evidence-based practice in Health Literacy today.  But he warns that providers need to insist that patient’s not just repeat back but actually describe in their own words what they are to do, “how they will take medicines for example.”

According to Morrison, the biggest challenge that the US faces to become a health literate society is that society as a whole is not learning what he calls “medicalese.”

“We need a health system overhaul. Providers and the entire system need to transform care to empower the individual. And someone can’t be empowered when they don’t understand the content at hand. The average American reads at 8th grade level.  Average health information is written at 10th grade or higher. That’s an example of a system change that’s needed.”

Morrison is feeling positive that the movement to improve health literacy is gaining momentum. “I think we’re on the right track…policy is changing, people are starting to pay attention. “Three years ago I would go into a room and five percent knew about Health Literacy. Now fifty percent do! People are getting it.”

See the full transcript of the twitter chat with Peter Morrison at Health communication, Health literacy and Social Sciences Tweetchat.

How-to Health Communication: Crisis Public Relations and the Susan G. Komen For the Cure Foundation

Crisis communication has to be a part of any organization’s make-up.  Why? The same reason the words “I’m sorry” are part of human vocabulary:  humans make mistakes.  Being able to effectively deal with a blunder,  can tell a lot about an organization.

So, what can be learned about the Susan G. Komen For the Cure Foundation from its continuing difficulties since February 2012?  A lot.

Historically, Komen has had positive press: after all, its creation is based one woman’s promise to her dying sister.  So it isn’t surprising that in January 2010 the Harris Interactive Survey ranking of 79 non-profits brand along a number of criteria,  Komen ranked # 2 in Trust and #1 in Brand Equity (familiarity and quality).  It also ranked as the #1 non-profit to which people are most likely to donate.

Yet, in December, 2011 executives at Komen decided that the Foundation would not be funding cancer screening exams at Planned Parenthood.  In March, a month after the story broke, Harris International’s press release described a huge drop in Brand Equity for SGK: a fall from #1 to #56. 

Without a crisis management strategy, the Komen Foundation has stumbled  for months. Why?  Summing up, it is because the Foundation has not followed the five steps that are basic to public relations crisis communication.

STEP 1:  The first step is to be prompt and address the situation immediately.  Once the story broke, Komen should have addressed their reasoning for their decision.  Yet in this case, when the news broke via the Associated Press, Planned Parenthood used social media, Facebook, email and twitter to spread the news.   In contrast, Komen did nothing.  Planned Parenthood framed the story.

STEP 2:  Another step in crisis public relations is to be informative.  When the rationale for the decision was not fully explained, rumors proliferated. After letting Planned Parenthood frame the initial story, a public outcry occurred over the decision (with protests from its own affiliates) and the Foundation reversed its decision.  The explanation that Komen gave for their first decision was that they wanted to avoid funding organizations that are under investigation by authorities.  Yet Komen’s continued funding Penn State’s Milton S. Hershey Medical Center to the tune of $7.5 million despite also being under investigation by local, state and federal investigations.

STEP 3: This inconsistency calls attention to the third step in crisis management:  be honest with the public.  As the above illustrates there may be a history of problems with Komen’s communication strategy along these lines.

As Rachel Moro stated on her blog

On their website, Komen clearly states that is their mission “to end breast cancer forever”.  This mission ties in nicely with the organization’s recent name change to Susan G. Komen for the Cure®. Straight-forward. For. The. Cure.  What does this statement mean?  To anyone reading it or hearing it, the mission “to end breast cancer forever” and to be “for the cure” would mean there would be a significant amount of money going from the Komen Foundation to research to actually end it forever and find a cure.

Moro, an accountant, did an analysis on The Komen Foundation’s public records.  She states that “Komen’s total “Net Public Support and Revenue”for 1982-2010 would total somewhere in the order of $2.1 billion.  Only $491 million of that has been spent directly on research.  That means that $1.6 billion has been spent on other things.”  What has it been spent on?

Komen’s records state that between 2004 to 2009, Komen allocated a total of $1.54 Billion of “Net Public Support and Revenue” to the following categories: Education 36%; Research 25%, Administration and Fundraising Expenses 22%; Screening 11%, and Treatment 6%.  As can be clearly seen similar amounts of funding were spent on administration and fundraising as on research.

So there is an important message that anyone who donates to the Susan G. Komen Foundation For the Cure needs to know. As Andrea Rader from Komen stated, finding a cure doesn’t mean actually doing research,”Research is just one piece of delivering cures for cancer. Education is critical: even today, many women don’t know they’re at risk for breast cancer, or they continue to believe myths like underwire bras cause cancer (they don’t).”  Komen’s definition of “for the cure” does not mean doing research.

STEPS 4 and STEPS 5:  Steps four and five in public relations crisis management go hand-in-hand. Step four is showing the public you care.  Step five is maintaining two-way communication, that is, listening to the public.  There has been a vocal group of women with breast cancer who have been trying to get the Komen Foundation’s attention. One blogger and journalist, Brenda Coffee, was able to ask a spokesperson, Leslie Aun, the National Director of Marketing and Communication for Komen for the Cure,  to post on her blog.  The requirement of that posting opportunity was for Aun to respond to the many concerns of the breast cancer blogging community, for example, the partnerships Komen has made with brands like Mike’s Hard Lemonade (alcohol consumption associated with breast cancer) or the selling of “Promise Me” a perfume with carcinogenic ingredients. Aun was supposed to respond to comments to her post and thus provide a mechanism of communication.  Aun wrote her post.   According to Coffee, it was a defense of the Komen Foundation.  Aun did not respond to any of the comments that were made to her post.

So the Susan G. Komen Foundation For the Cure has been going through some significant personnel shifts over the past few months.  But is this enough?  Susan G. Komen was a young woman who had an extremely aggressive breast cancer that metastasized.   The Foundation that is named after her needs to remember that this terrible tragedy of her loss is being repeated.  Breast cancer is not being cured.

In those who have metastases, it is a life sentence to constant invasive, painful medical treatment and eventual death. Moro  poignantly wrote, “For me and the people I know who are in treatment for breast cancer, we understand a “cure” for our disease to mean that we will be completely healed and never have to worry about breast cancer invading our lives ever again. “  This is poignant since she died of breast cancer in February 2012, close to the time when all of the decisions about Planned Parenthood broke in the press.

The case of the Susan G. Komen Foundation For the Cure is not over.  There is time to work through this crisis with openness, honesty, information, and two-way communication with those who have breast cancer and their loved ones.  The officials leading Komen just need to take a few steps.

 

 

 

Making a World of Difference: Climate Change and Public Health

“It is an overwhelmingly popular misconception that climate change isn’t occurring or is a natural phenomenon.  While some change is due to a natural progression, we can see that increases in temperatures are far more rapid than occurred historically.”

Mey Akashah, PhD doesn’t flinch or deny global warming but tries to face it, find answers and generate attention to the crisis.

Her journey began studying marine biology.  However she realized that, even though climate change is making a huge difference in the earth’s oceans, people weren’t really interested.  She recognized that, to make meaningful changes in the effects of climate change on the environment, she would need to change. She shifted gears, going to graduate school in global and environmental health and hasn’t looked back.

Now, as a public health professional and award-winning human rights activist, Mey Akashah tries to generate the attention climate change demands.  Her academic publications include compensation for human rights abuses, the impact of climate change and environmental degradation on conflict and sustainable livelihoods, and the health impacts of mercury contamination in the Arabian Gulf.  Towards this end, Dr. Akashah participated in a twitter chat on September 13, 2012.

The chat began with the ozone layer.  Chloroflourocarbons, known agents of ozone layer depletion, are banned.  Yet new evidence published in August describes previously unknown mechanisms of ozone depletion.  Dr. Akashah featured this research by James Anderson and his colleagues on her blog.  Apparently there is a connection between climate change, clouds and cancer.  “Climate change makes storms stronger and more frequent. Strong storms press water into the ozone layer. Water vapor breaks down ozone.  Less ozone equals more UV rays reaching us.  More UV rays equals more skin cancer.”

The cancers of greatest concern are melanomas in areas under the ozone hole.  Countries seeing higher rates of melanoma are Australia and New Zealand.  Since the research was based on observations of storm phenomena over the United States, it can be assumed that this situation is occurring the world over.

Increases in cancer are not the only health concern the world faces.  “Unfortunately, most health effects have begun to be seen already.  The question is one of intensity and frequency.  The World Health Organization (WHO) estimates that anthropogenic climate change already claims over 150,000 lives annually.”  Some of the diseases linked to climate flux include “cardiovascular mortality and respiratory illness due to heat waves, altered transmission of infectious diseases, and malnutrition due to crop failures.”

With a bow to naysayers, Dr. Akashah states “there is uncertainty in attributing the expansion or resurgence of diseases to climate change.  But, this is largely due to the lack of long-term, high-quality data sets, as well as changes in immunity and drug resistance.”  However, Dr. Akashah points out, “we do know enough to know that it is a problem and that we need to act on it now.”

What is being seen is “injuries due to extreme weather, air pollution-related effects : increased infectious diseases (water-, food-born like cholera, vector-born, for example, malaria, and zoonotic, that is, any disease from animals to human and vice versa like rabies.”

Asthma is increasing.  In fact, in Florida it is due to an unusual source, “increased algal blooms (Red tide).” The progression of the health issues will change over time.  “Some of these changes will have a slow onset. Initially, we will see higher acute asthma attacks, heat stroke, etc.  Over time, these occurrences will become more frequent and more severe. This increase in intensity will coincide with more frequent severe weather events and natural disasters.”

Who are the most likely to be affected? “As per usual in situations of increased stress, it is the most vulnerable who will suffer most severely.  We can make the correct assumption that these will be the poor, disenfranchised, older, and younger members of the population.”  Climate change impacts those who are geographically vulnerable.   This includes people who are in extreme climates like desert nations and those in arctic climates. But it also includes areas of low topography, like island nations and nations with high water tables such as Bangladesh.

Yet another locale that is vulnerable are sprawling urban areas.  These areas “where trees and turf have been transformed into asphalt,” (cities include New York, Los Angeles and Dallas) are seeing what is called a “heat island effect.” What this means is that “these changes cause urban regions to become warmer than their rural surroundings, forming an “island” of higher temperatures.”

Why should health care workers be aware of the health effects of climate change?  According to Dr. Akashah, “We need healthcare workers to be aware of these changes… to help track health trends and to identify and spur health communication towards vulnerable populations.  But we also need their help as disasters and acute crises become more frequent.”

There are actions that can be done to help and Dr. Akashah is taking steps.  “Most of the work I do now involves climate change adaptation – facing the inevitability of climate change in poor communities, especially.”   She is attempting to create low cost solutions to flooding, drought and other consequences of climate change.   “Often the best ideas come from the communities, themselves,” she states. “Our job is often to disseminate the knowledge.  I think giving people a voice is the most important hurdle.”

To illustrate, Dr. Akashah told participants, “An example of the dissemination of community-originated ideas is raising ducks instead of chickens in flood-prone areas.”  Dr. Akashah notes the many studies show the importance of listening and supporting communities, “especially when women are empowered with small funds for sustainable harvests…it improves both maternal and child mortality and increases the proliferation of sustainable farming practices.”

Action is important.  Dr. Akashah suggests paying particular attention to sustainable development.  “Sending donor funds to small sustainable entrepreneurships in these areas” can make a world of difference.

For more information on Mey Akashah, PhD  please see her website: Mey Akashah

For a full transcript of the #hchlitss twitter chat please see: Health Communications, Health Literacy and Social Sciences blog.

Responding to Komen’s New Awareness

MBNCBuzz just posted this advertisement by the Komen Foundation.  It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign.

The irony that Susan Komen died of metastatic breast cancer is not lost on those who live with it.   Recurrences of breast cancer are not uncommon.  Close to one-third of the women considered “cured” of breast cancer will suffer from a spread of the cancer called metastases.  This can happen many years after their initial diagnosis.  Over 90% of breast cancer deaths are due to the spread of the disease to other parts of the body, such as bone, lungs, liver and brain.  Although there is no exact numbers collected, a rough estimate is that around 162,000 women are living with metastatic breast cancer in the United States.  There is no information collected on historic trends.  Treatments to prevent metastases do not exist.  Treatment to eradicate metastases do not exist.

There has been much discussion in the cyber world of the foibles of the Komen Foundation.  One of the best descriptions of the use of monies by Komen was written by an financial analyst Rachel Moro in her blog The Cancer Culture Chronicles.  She explains in pie charts and graphs the intricacies of Komen’s spending and reveals how in 2010 only $66 million to research in a year when its total revenues were $389 million.

Those who live with breast cancer wonder where all the money that has been raised has gone.  They are concerned that funding for research to cure breast cancer has not been directed at what actually kills breast cancer patients, metastases.  So many loved ones have been taken by metastatic breast cancer.  One of those who has been lost is Rachel Moro.

This advertisement does not come close to the whole story of Bridget Spence’s life with breast cancer.  Her most recent post on My Big Girl Pants is a poignant reminder of the suffering experienced by those who have metastatic disease.  As of August 28, 2012 Bridget’s cancer has spread.  She is not able to be a part of a clinical trial.

The National Breast Cancer Coalition has set the year 2020 as the end of breast cancer deadline.  The organization has put together a Blue Print  for the End of Breast Cancer.  The Coalition is bringing together researchers in a series of summits.  Suggestions for research provided by just one of the summits include developing technologies to detect the first signs of metastasis . Another suggestion is to do longitudinal cohort study, to follow women from the time of diagnosis, comparing those who develop distant metastases with those who do not.  A third idea is to do this in conjunction with tissue collection and genome sampling.

Funds from the Komen Foundation could be used for any of these ideas.  As Ginny Knackmuhs stated in her post the best copy for this marketing campaign would be

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

Please look at all the links to blogs of women who are trying to make a difference.  Perhaps putting more pressure on the Komen Foundation to partner with NBCC or communicate with MBCC is in order.  Ask yourself what you can do to be a part of the solution.  This effort to save those with breast cancer needs ideas and action.

Parents Take Notice: Seclusion Rooms

This is beyond disturbing. Does anyone from the school(s) explain the length of time rationale? I mean, don’t get me wrong…the padded room is ridiculous enough, but more alarming is the length of time a child is placed in this type of room as a  ‘time out’ for their behavior.

Most childhood experts agree that the 2-5 minute rule is sufficient enough time to calm down any unruly behavior. After that, a ‘time out’ isn’t even effective.

It was a horrifying experience and what started my investigating into it was the length of time. We now have in place time limits as to what they can do and for how long and when a call is to be made to us. I would rather come get my son than have him be subjected to such treatment.

This absolutely sickens and frightens me! My child’s summer program was in a school building in [name removed to protect child] that had one of these padded rooms. We only found out about it after a note came home the first week stating s/he had been placed in time out for over an hour because s/he wouldn’t comply. I was livid and shocked that my 6 year old, whom I had never been told prior of such issues, was in any time out for that length of time. When I went to the classroom to see where this time out took place (it was in a makeshift seclusion area with three walls and a mat higher than his/her head, for the fourth) was when I saw this padded room. I was told that s/he wasn’t placed in there because another child was already using it. They told me that s/he was in for so long because s/he kept crying and trying to kick the mat down. Well, hello, s/he’s 6 years old and mostly non-verbal! Wouldn’t it make sense that s/he would be scared and react that way? Needless to say, we kept major tabs on them for the rest of the summer. It’s very sad that this is how some are treating our children, special needs or not. I’m not sure what we can do but keep tight eyes on them and make it known that we will not tolerate this treatment. It’s just another scary part of letting our children, especially those without their own voices ,out without us. I hope something is put into place to stop allowing this.

These stories are not uncommon and they are covered in the press because they are so compelling. Never covered are the stories about the trauma kids suffer everyday from being forced to endure years of failure, humiliation, and rejection because their schools refuse to provide them with the services they need in order to learn. 

The above comments in Italics are only some of the comments made by real parents in Massachusetts and over the United States over a truly disturbing development in “care” of our children.   It is “seclusion rooms.”  Please read this description on the opinion page of the New York Times.   This is occurring all over the US.  Here is another story about seclusion rooms.  Then sign this petition.  We parents need to act.

The photo above is from CAIC .

Patient Safety: Costs in Healthcare

For many years my mother worked part-time in a hospital in North Carolina in quality.  In researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that was preventable.  It was a problem that patients got in the hospital.  It was painful and could be life threatening.  It was bed sores also known as pressure sores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training was discontinued, the nursing staff did not know how to prevent this, nor did they know how to treat it. My mother was able to help my sisters and I find the skin care expert that had been hired.  Through her, we got the type of dressing that mother needed to promote healing.  We took over,  turning her, giving her bed baths and doing “bedpan duty”.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, actually suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, even though she had cancer.  We showed the nurses how we were caring for her and asked if they could use the dressing on the man next door.  Sadly, if it was not ordered by his physician, there was nothing that could be done for him.

The Institute of Medicine has just put out a substantial report, 45o pages, which describes what is wrong with healthcare in America.  It is called “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  Continuously learning healthcare means that just because there is improvement, efforts in quality control cannot be stopped…it means continuous training and monitoring.  According to the report, in the US 1/3 of patients are actually harmed during their stay.

There are efforts to help.  Campaign Zero is an effort to “provide safety strategies to patients and their family-member advocates to prevent medical errors.”  OccupyHealthcare supports promoting patient safety to reduce healthcare costs.  Take a look at their websites and take this survey.

To your health: Music!

I’ve been singing something a lot lately.  It’s silly really but it makes me feel better, keeps me going, even gives me courage…

why does this little ditty work?

Or why do I feel peaceful when listening to this piece of music?

I went looking for a journal article. Just to prove to myself that there was something in this sense of well-being.  Here it is.  In 2008 a group of physician researchers convinced 60 patients who had just had a middle cerebral artery stroke (they were “in the acute recovery phase”) to take part in a little experiment.  At random, the patients were placed in three groups, a music listening group, a “language” group and a control group.

Everyone took neuropsychological assessments, cognitive tests and quality of life at the begining, at 3 months and at 6 months after their stroke.  With all the testing its a wonder that only 6 patients dropped out of the project!

Everyone received the same standard of medical care and rehabilitation that they needed.  The differences were the listening assignments.  The music group listened to music daily, the language group listend to audio books daily, the control group were given no listening material.

Here’s the cool part.  The music group had significant improvement in verbal memory and in focused attention as compared with the other two groups…AND they were less depressed and confused than the control group.

So with this one journal article, I say: sing, turn on those mp3’s, radios, cds, even if you are still in the dark ages,  tapes, 8-tracks or records.  Have a blast with a tin penny whistle, a guitar, a piano, a cello, a french horn….It’s great for your health!

Sarkarmo, T. et.al. (2008)Music listening enhances cognitive recovery and mood after middle cerebral artery stroke.  Brain: The Journal of Neurology, 131(3). 866-876

Amazing Gratitude

I feel lucky when I find amazing quotations….

“I wanted a perfect ending. Now I’ve learned, the hard way,

that some poems don’t rhyme,

and some stories don’t have a clear beginning, middle and end….

Life is about not knowing,

having to change,

taking the moment and making the best of it,

without knowing what’s going to happen next.

Delicious Ambiguity…”

                                                                                 Gilda Radner

It is very important to understand that life is change, constant change.  When you are young, permanence is important. As you age, you see the beauty in the change.  Without rain, wind, this beauty would have not been born.  We are also born and reborn through change.

Here is yet another wonderful quote to round out what Gilda Radner says.

“You gain strength,

courage,

and confidence

by each experience in which you really stop to look fear in the face.

You must do the thing you think you cannot do.”

                                                                    Eleanor Roosevelt

Both of these amazing women lived their lives to the fullest and did the things they thought they could not do.   I post them here to remind myself, to delight in their wisdom and to express gratitude for their words.

Cancer Language: Erasing Reality

culture:  the integrated pattern of human behavior that includes thought, speech, action, and artifacts and depends upon the human capacity for learning and transmitting knowledge to succeeding generations  Merriam-Websters.

The first  Sunday in June is set aside as National Cancer Survivorship Day.

It is described on the website as “an annual, worldwide Celebration of Life,” as “a day to unite together in a show of solidarity of collective cancer survivorship.”

Yet how do people who have cancer feel about this day?  A large number of bloggers have answered that

question.  Yvonne Watterson of Phoenix Arizona is one of those bloggers. She is part of a large cyber community, bloggers and twitter activists who tweet with the hashtag #bcsm.  “I have been educated by amazing bloggers. I knew nothing of metastatic cancer until #bcsm.”

With no family history, negatives on all her mammograms, and a love for fruits, vegetables and exercise, Yvonne was caught off guard by her diagnosis of breast cancer on November 11, 2011.  As she states, “I used to complain about the pace of life as a woman trying to play equally well the parts of mother, wife, friend, and boss.”   Not anymore.  And since that day she has written about her experience on “Time to Consider the Lilies.”

One of her fellow bloggers is Marie Ennis-O’Conner.   In Journeying Beyond Breast Cancer  The stimulus for this posting was the media’s coverage of Robin Gibbs death  ‘Robin Gibbs lost his long battle with cancer.’ In Why Words Matter,  she asked other bloggers the question, “Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?”    Yvonne took up the challenge to try to write about the language of cancer.

These women with breast cancer are trying to bring awareness that the terms, “battle,” “winning,” and “survivor” are all the part of the language of the cancer culture.  As Yvonne states, “Language is inextricably tied to culture,

and a definite cancer culture has evolved with a language all its own…There are so many messages out there suggesting that perhaps I chose to take on a battle and then did something to defeat an opponent.”  One of the most unsettling aspects of the language of this culture is the exclusion that so many feel.

“Those who are dying or have died are described as ‘losing’…  I don’t think we can really choose not to be victimized by cancer. It’s an unexpected assault, defying explanation.”

Yvonne believes the media treats breast cancer differently.  “…Breast cancer…has been sanitized by [the] media.  Too many pink euphemisms, myths and war metaphors are attached to cancer.  Is this a concerted effort to conceal the reality of it?”  Yvonne asks.

“I almost cried when I read Marie’s words about [erasing those who are dying],” says Yvonne. “It reminds me of a post I discovered by someone identified as Kelly K. Here it is:

“With no family history, no positive genes, I was diagnosed with stage III lobular triple positive breast cancer at 29 and mets [metastases] at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours …being interviewed for a video..[Komen] do[es] about the honorees’ breast cancer story…. Komen edited out every reference to my mets in the video….If that isn’t pink washing, I don’t know what is…”

Setting aside a day for “survivors” may seem innocuous to some but not for many in the breast cancer blogging community.    As Yvonne points out,  it “seems so insensitive and disrespectful to those who have been killed by the disease or those who are unable to live without being shackled to it.” For clarification Yvonne explained that the word “’Survivor’ …seems to focus on a stage of the disease that is more ‘socially acceptable.’ The often harrowing stories of those who are living with metastatic breast cancer are rarely publicized by mainstream media.”

In addition to erasing the fact that breast cancer spreads in 30% of those who are diagnosed, integrated in the culture of breast cancer is  “a wholly dreadful expectation that you should be more cheerful if you got the ‘good’ kind of cancer.”  Likewise guilt is part of the cancer culture.  “‘Prevention’ is wrapped up with ‘surviving’ and tends to make me think I could have done something to prevent the diagnosis.”

Somehow those with cancer must be like the contestants on the reality show “Survivor.”  They must outwit, outplay and outlast cancer.  Second guessing themselves is the fate of those living with this cancer culture.  “I  am still indignant about cancer showing up in my life and I am afraid of it progressing. Before the diagnosis, I hadn’t given it a second thought … it was the thing that happened to other people, perhaps women who missed their mammograms or who had a family history, but not to me. Why me? And so I go back to thinking I may have caused it,  which I know makes no sense whatsoever, but I can’t help it.”

So what word does Yvonne believe encompasses why one person has cancer and another doesn’t or why one person’s cancer spreads and another’s doesn’t.  “I don’t know the “right word” for those of us ensnared in the complexity of  cancer. But it seems more to do with ‘luck.'”

In her post,“he not busy being born is busy dying,”  Yvonne draws parrallels between avoiding the reality of cancer and escaping the “troubles” in Northern Ireland.  “I relate my experience with cancer to growing up in Northern Ireland. We didn’t live in fear every minute but knew we were lucky.’Devices of Detachment’ by Damian Gorman explores how Northern Ireland’s people distanced themselves from

junecaldwell.wordpress.com

violence. Seems we do same with cancer.”

I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among …
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.

#BCSM and the blogger community have been a lifeline for Yvonne.  “Were it not for this online community, I know I would be quite lost in the culture of breast cancer.”

There she has support and a place free of cancer culture expectations,  “I am so grateful for the solidarity and the safety I have found within the blogging community.  I think we all cry out ‘Why?’ and our collective attempt to see that this question is answered is powerful.  I believe we are unified in our search for answers to questions we are afraid to ask within a world that seems to ‘celebrate’ those who drew the long straw… But, for me personally, saying I survived cancer would be like saying I survived growing up in Northern Ireland. I would never say that. I would say that I was just luckier than others.”

Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.”  (Luke 12: 27)

Motivated to Act: SCAD

The words, “We don’t know” pushed Katherine K. Leon to initiate research at the Mayo Clinic.  Why is this unusual?  Katherine is not a physician or a researcher.  She is a patient. But she believes that “with a rare diagnosis, the patient often knows more than the doctor,” and she’s taken action.

At age 38 after the birth of her second son, something unusual happened to Katherine.  This physically fit woman with no risk factors for heart disease had a heart attack.

It was caused by a spontaneous coronary artery dissection SCAD.  SCAD is an extremely serious and sometimes fatal condition. This is what happens in a SCAD event.

Coronary arteries, the arteries that feed the heart, have 3 layered walls. With SCAD, the wall develops a tear, causing blood to flow between the layers of the arterial wall. Pieces of the arterial wall can act as a flap, stopping the flow of blood and causing a heart attack or even sudden death.  Eighty percent of the people suffering from SCAD are women. SCAD can be fatal but Katherine survived.

Why had this happened to her?  No one could answer this question.

She found out that what had happened to her was rare.  And when a disorder is rare, there is often little interest in research.  It took Katherine over six years of searching to find another survivor of SCADS.  She found her online through the Women’s Heart online community which is hosted by Inspire.

Katherine didn’t know she was an innovator when she started looking for fellow SCAD survivors online.  She was just grateful not to be alone anymore.  And she wanted to figure out what made spontaneous dissections of the blood vessel walls occur.

Year after year she persevered.  “My motivation…I wanted to prove SCAD  wasn’t rare, that it could recur.  I’m  worried about my kids and others on the message board. They are loves.”

By the fall of 2009 she had found 86 survivors. “Finding each other around globe [is] one obstacle…it took time.”

She started to keep a database, logging  the age of each individual at the time of their SCAD event.  Other pieces of data she collected included how the event occurred, whether it happen around pregnancy or was the cause  unknown, which artery was involved and what treatment was received.   One of the challenges Katherine faced was building trust.  Katherine used screen names in her research.  “[I] slowly built a “database” with each conversation. Keeping [the] threads going [is the] key to attracting new SCAD survivors to Women’s Heart.”

Each individual in SCAD survivor group had their own ideas and theories about SCAD.  “[The] women were great with posting [their] own surveys. We researched ourselves through the online community. Each  woman who found the message board added new perspective and enhanced the research goals and agenda over time.”

Patient-initiated research is a new phenomenon and Katherine is the initiator.  She pulled trends from her data that she put together for a proposal. Specifically she found events occurred right around onset of menstruation, others were associated with connective disorders, like Ehlers Danlos, later FMD, but the largest group were associated with pregnancy and childbirth.  “Our conversations were the raw data.”

Once she had gathered information she started the job of pitching her idea of research.  First  she had to find the institution and medical researcher.  She realized that she couldn’t just say “we want to be researched. You need to be able to answer ‘Why should we research this disorder?”

“Researchers want diagnosed bodies to study. Total package!”  The fact that Katherine could point to a group of 60-70 patients gave the research physician  a ready-made database. “

Then she researched different research hospitals for research cardiologists that would be interested in a woman’s illness.  She found the researcher, Dr. Sharonne Hayes.   She’s “Interested, open and compassionate.”  And Mayo Clinc, where Dr. Hayes is located, is a large institution already attuned to social media.

The benefits for Mayo and Dr. Hayes are huge.  Katherine had provided them with  patients who “self identified, who were willing and eager. There was no two-year start up just to get consent. “

She has been a featured speaker at two conferences both at Mayo, the WomenHeart Symposium in 2009 and the Health Communications Summit held at Mayo Clinic Center for Social Media in 2011.  These events have “defined my role as patient advocate. Before, I just felt I was doing what needed to be done.”

And she did.

Tomorrow Isn’t Promised

“Sadly people always believe they will have time later; trauma taught my family tomorrow isn’t promised.”  Alisa Hughley 2012

At 16, Carey Hughley excitedly showed his little sister, Alisa, 12, his brand new driver’s license.  He proudly explained all the information on the license, including the big heart.  “You’re an organ donor?” she asked.  “Yeah…I’m not gonna need ‘em when I’m dead,” he said. That answer stayed with her.

At Jordan High School, in Durham, North Carolina , Carey was an athlete, swimming on the team that set the state record in the 200-meter freestyle relay.  He was also an artist, musician, song writer and poet.

In 1997 Carey attended J. Sergeant Reynolds Community College in Richmond, Virginia and  planned to transfer to another school and study music.

At age 21, his life was cut short when he was shot at point blank range by a fellow student, someone with undiagnosed paranoid schizophrenia.  He arrived at the hospital and pronounced brain-dead.

In the hospital, his family faced a difficult decision.  Alisa remembered  her brother’s wish.

Today Alisa Hughley is a health communication specialist.  Her journey into health advocacy started with telling the “world about the lives Carey saved.”

At the Hughley’s church in Durham, a woman had shared her story of dialysis and being placed on the UNOS waiting list for kidneys.  At Carey’s aunt’s church in Virginia another woman was near death and on a waiting list.  The family directed Carey’s kidneys to each of them.  Amazingly the  kidneys were a match for both women.  The family later learned that Carey’s liver had gone to a  47 year old father of three and one of Carey’s lungs went to a woman who was able to go back to work.

There are 25,000 organ tranplants a year in the US, but every day, 16 people on transplant waiting lists die. According to the US Department of Health and Human Services Office of Minority Health, the rates of diabetes and high blood pressure, two conditions that put peoples organs at risk of failure, are higher among African Americans.  African Americans  make up 29% of the total candidates currently waiting for transplants yet they comprised 14 percent of organ donors.

Alisa ‘s advocacy focuses on increasing deceased donations among the general public but also among minorities.  “Members of the minority communities, both blacks and latinos, are particularly resistant to donation; certainly above a certain age.  Minorities don’t realize how many other minorities are in need of organ transplants. I really try to explain how they already know someone on dialysis in kidney failure.”

One of the ways Alisa advocates is by explaining how a person can come to need a transplant.   “Hypertension and diabetes can lead to kidney failure…causing a need for dialysis and finally the need for a transplant.”

There are many misconceptions around organ donation, most born of a distrust of the healthcare system.    “Many minorities believe their organs will go to Dick Cheney.”  She works to dispel myths like organ donors can be denied a funeral or that if organ donation is indicated on a  driver’s license medical professionals will be less likely to save the individual in emergency situations.

End of life planning is a difficult topic to discuss.  But as a health activist, Alisa believes that it is possible to move people to action by getting them to feel.   “Art creates emotion which motivates action.  Poetry, or a skillfully told story, can be art.   I try to elevate my family’s story to art.”

Elevating end of life planning to be a part of everyday discussion is a challenge.  She believes that when Carey shared his decision to be an organ donor, he  took the first step in his end of life planning.   “Sadly people always believe they will have time later; trauma taught my family that tomorrow isn’t promised.”

Alisa definitely feels Carey lives on through organ donation.  But she felt she needed to do more.  “Homicide robs victims of their identity.  They are obscured by the media‘s  focus on the murderer.”

Throughout high school and college Carey wrote poetry in notebooks that he saved.    In the hospital where Carey died, Alisa promised her mother that she would publish her brother’s poetry.  Grief and life interrupted her quest, but over the course of 12 years  Alisa pulled together Carey’s notebooks, his photographs and remembrances to create the book III Gifts.  

His voice was silenced before he could share it.  I became his voice.    III Gifts gives Carey his identity  back.”








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Awareness Months

In Action:  Beyond Awareness I broached the subject of Awareness Months.  Because there is some confusion, I am going to discuss the Transtheoretical Model to clarify.

Prochaska, Norcross, and DiClemente developed the Transtheoretical Model.  It is used extensively in developing behavioral change programs for individuals.  The model describes the series of stages that an individual goes through in the process of change.

Precontemplation:  This is the first stage.  It is when the individual is unaware or underaware of their problems.     There is no intention of changing behavior.

Contemplation:  The second stage is contemplation; the person is aware that a problem exists and is thinking about it.  They have not made any commitment to take action.

Preparation:  Some behaviorists parcel out this stage into 2 parts.  First, the individual  intends to take action in the next month.  Second, they have made a commitment to do so.

Action:  This is the stage where the individual makes overt behavioral changes.  Modifications in behavior, environment or experiences occur.

Maintenance:  During this stage, the person works to prevent a relapse.  The gains achieved during the action period are integrated into their life.

Relapse:  Unfortunately, there is the opportunity for relapse.  Those who have relapsed may move into the preparation stage again or remain relapsed.

One of the most important features of this model is that it is all about the individual–moving the individual along a path toward change.

What does this change model have to do with Awareness Months?

Awareness Months assume that everyone who is receiving information is in the precontemplation stage.  They assume that all individuals being targeted by the campaign are unaware or underaware of the disorder/disease.   This is not the case.

When measuring the impact of an awareness campaign, pre-test/post-test surveys are done. The people who didn’t know anything about the disease/disorder or the material in the campaign (found in pre-test) are asked if they learned anything during the campaign.  If there is a change in knowledge among those people, the campaign can be termed “successful.”  There can also be questions about intent to do certain actions that the campaign promotes or even checks to see if actions actually occurred.  {An example of an effective campaign among those with low health literacy can be found here.}

What happens if an Awareness Month is only about letting people know how to determine if they or their loved one has a disorder?  Or what if an Awareness Month is only about preventing an individual from getting a disorder?

If the focus is on preventing the disorder, isn’t there an unintentional stigma “out there” for those who have the disorder?   It is as if  having the disorder is something that you could have controlled/prevented.  In most cases, this is not true.  Genetics plays a significant role in our lives.  The environment that we are surrounded by, pollutions or toxins we do not know about, impact us from babyhood.  The interaction between our genes and our environment can result in diseases and disorders.  Is that the fault of the individual?

People with the disease or disorder and/or their caregivers are fully aware.

Awareness Months that focus only on prevention or only on determining if an individual has a disorder leaves out people who have the disorder.  It doesn’t make anyone aware of what it is like living with the disorder nor does it help those dealing with that reality.  It doesn’t make anyone aware of the financial burden of the disorder; or the incredible efforts made by caregivers on behalf of those who have the disorder.  

So, where do you think change is needed?

Blogging for Mental Health: Reframe the Discussion

Today I am responding to the call for bloggers…

Join us on Wednesday, May 16, and publish a post on your blog about mental health’s importance, how we can diminish stigma, or the challenges of making lifestyle and behavior changes. Tell your story. Share your experience. Mental health affects everything we do. No matter what you regularly blog about, there’s a way to incorporate mental health.

When I think of ways to de-stigmatize mental illness is to reframe the discussion.  What is mental illness but a disease of the brain?

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understanding that the brain is an organ that can get sick just like the stomach or lungs and funding research from this perspective would be a huge step in the process or reducing the stigma of “mental illness”.

Action: Beyond Awareness

In the 80’s and 90’s I watched public broadcasting shows and tired of the environmental documentaries.

Why?

Because the documentaries left me depressed.  All the terrible changes were and still are occurring.  Man wasn’t sharing the world but dominating it.  I was made aware but left hopeless with every documentary because there were no actions I could take to help.  The documentaries brought me to awareness, but then stopped there.

I feel the same way about the slew of Awareness campaigns.  They are all the rage.

Why do we just “do” Awareness?

Because it’s the easiest type of campaign to create and to document that some type of “change” has occurred.

So there are months or weeks or days devoted to “Breast Cancer Awareness” “Pancreatic Cancer Awareness””Autism Awareness” “Mental Health Awareness” ad infinitum.

A truly positive aspect of these campaigns is the impact on acceptability.  People can bring up the word cancer in conversation,  mental health and illness is being discussed.

So what is wrong with all this “awareness”?

There are campaigns that are outdated.  An example is that  early detection via mammography leads to a cure for breast cancer.  First, those who have been diagnosed, no matter the stage, can have a recurrence.  Metastatic breast cancer is the reality for one third of those diagnosed with breast cancer.  Another fact that is not being shared by those in the Awareness business is that mammograms may not be enough to find women with dense breasts need to be notified that mammograms are not the best tools to find the lumps.  So women getting mammograms are getting false hope with the yearly all-clear.

Another example among families living with autism is lack of support for the family…the financial burden…the constant observation that must be maintained in the school system to assure care.  After graduation from high school, how does the adult child function in society?

Awareness campaigns seem to just touch the surface of a problem but do not address the nitty-gritty of those who are experiencing life fully.

And there is still the stigma that people with mental illness, metastatic disease, disabilities face?

How do those who are experiencing pancreatic cancer, breast cancer, autism, feel about all this “Awareness”?

I’m sure there comes a time when they say, “Enough already.”

Light A Lamp

http://katscafe.org/wp-content/uploads/2012/03/Bobby-1-Kind.jpg

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.

Pull Over & Pay Taxes

A couple of days ago, I heard the waaah-waaah-waaah   of an Emergency vehicle. I pulled over. I then watched as other cars passed me, ignoring the Emergency, ignoring the people who were trying to get a victim of an accident or heart attack or whatever, to the hospital in time to save her.  I thought about the EMT that I know who woke me up to the facts of an EMT’s life, especially to the incredibly low pay they receive for their heroics (at least locally).

This is the transcript of a commentary that I heard yesterday on Marketplace.  It’s called ‘I Love Taxes’.   I feel that it should be read and heard by as many people as possible.

Melissa Chadburn: I love taxes. When I pay my taxes I am telling my community I value you.


Kai Ryssdal: Commentator Melissa Chadburn.


Chadburn: I’m talking about the guy who works for Department of Transportation who helped me get to and from school and thousands of job interviews.

I’m talking about my teachers: Ms. Smith who was my high school English teacher and saw something in me. Ms. Marshall, the junior high journalism instructor who saw I was abused and got me into foster care — a long, achy road, but one that perhaps saved my life.

The nurses who tended to me when I was exposed to tuberculosis as a young child. The military that helped so many members of my family escape poverty and discover a nation they believed in so much they’d risk their lives for it.

The firefighters who do the unthinkable, who run into burning buildings for perfect strangers. Firefighters who often had to come out to emergency cold weather shelters, where I worked, in the middle of the night to tend to a homeless person who was scared they were losing their mind. Sometimes all they needed was some attention. I’ll never forget one Christmas working in the shelter. A firefighter bent down in front of a homeless woman smiling and placed a band-aid on her unwounded eblow just to give her a secret joy.

If we are saying “I value you” when we pay our taxes, what are the people and corporations who don’t pay all their taxes saying? Are they saying the opposite? Are they saying that all those people who do so much for us every day don’t matter?

Melissa Chadburn is a writer who lives in Los Angeles. She is the co-author of “Uncommon Service: How to Win by Putting Customers at the Core of Your Business.”

Beginnings and Endings

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my family.  Today I make lemonade by looking at this quote.

My dear uncle died yesterday after almost two years of the debilitation that Alzheimer’s Disease can bring.   He was a wonderful, intelligent and a very funny man.  He was also an over 25 year survivor of a cancer that had metastasized to his pelvic bone and lymph nodes.

My dad, a urologist, found the cancer and enlisted an expert in the Chicago area for his care.  But I know it was my uncle’s indomitable life force which made him the longest survivor of the clinical trial that saved him.  I think he was a little angry at his sister, my mother, for dying of breast cancer, for giving up.

In the end, when he realized that he was losing his mental faculties, he created notebooks to guide my cousin and aunt through the process of losing him…he had all the paperwork they needed in one place…long term care insurance, bill payment, his wishes for end of life care…laid out in these notebooks.  He gave them a great gift and made lemonade from lemons.

He and my mother grew up with a lemon tree in their backyard in Puerto Rico.  When I saw that tree as a child, it was ancient, filled with fruit and the sweet song of the Reina Mora.  Its fruit made the best lemonade I have ever had or ever will have.

So today, I savor the memory of that lemonade as I remember a very special person.  And I wonder at the new beginnings  that this ending may bring…

Let’s get the message right!

Life in the Deep South is definitely different from life in say, Boston.  For one thing, most towns in the South don’t have sidewalks.  Mass transit just does not exist…it’s the car or nothing.

In the summer, it is HOT.   You have to stay indoors and you need air conditioning because it is HOT.  …and did

I mention that it is HOT!  I don’t mean 80 degrees, I’m talking about 95 degrees plus and that’s in the shade.  And it’s humid, often between 80 and 100 percent.  It doesn’t cool down at night either…you’re lucky if it’s in the 80’s at 11pm.

To cool off, it’s sweet ice tea.  If there is a public swimming pool, the water is warm as a bath and the pool is really crowded.  Most poor kids raise themselves during the day, because there is no school, no camps, no one to watch them…mom and dad are working.

Alright…the stage is set, the reader is wondering where this post is headed.  It is headed for a rant:   A rant about bullying, victimization and childhood obesity.

When I read about Disney’s recent boondoggled attempt at “addressing” childhood obesity, I wasn’t really all that surprised.  After all, I’ve come to expect insensitivity from movie producers that start their children’s movies with the child hero losing a parent.

Ads created by a pediatric hospital in Georgia are the same thing.  Just another grim reminder that medical professionals lack significant training in social determinants of health or for that matter, nutrition.  As one recent survey reveals, physicians felt the “greatest barrier to managing obese patients [is] lack of patient motivation.”  Oh really, doctors?  Then tell me, how do you explain all the money that is spent on dieting?

So another $50 million is wasted on an ad campaign telling people that the individual is the problem.  Only Disney knows the amount of money and time wasted on their Epcot debacle.

So let’s go back to the earlier description of summer in the South or a description of much of the United States.  There is little environmental support for children dealing with weight.  School physical education programs have been cut back or eliminated to reduce costs.  Snack machines and drink machines are part of today’s school setting.  Sidewalks and safe neighborhoods are the exception, not the norm, especially in low income areas.  Restaurants supersize portions and membership in the clean plate club is mandatory.  Parents in the workforce come home exhausted and rely on easy to prepare meals to make it.  Children are targeted by fast food, fatty food and sugary drink commercials.  Instead of decent grocery stores, fast food restaurants and quick stops are within walking distance of neighborhoods.  Fruits and vegetables are expensive to buy and can be time consuming to prepare.  Medications that children are required to take to be in school ‘cause kids aren’t allowed to be kids nowadays can reduce metabolic rates so it make it very, very difficult to lose weight or to keep it off.

Life intervenes.

So let’s stop talking about all these unmotivated individuals!  Bullying and branding people doesn’t help.  Instead put all that cold hard cash to good use…put in some sidewalks, clean up some playgrounds, put in a few public pools for crying out loud.

Public health, let’s get the message right.  Childhood obesity is the symptom.  The environment is the cause.


Begin With the End In Mind: Let Evaluation Lead

Nothing says success better than provable results! So it is easy to see why the folks at Health Literacy Wisconsin are smiling from ear to ear. This past fall they put together a winning health communication campaign by sticking with the fundamentals: they did their research. Erin Aagesen, MS, MSPH, the Health Literacy Coordinator at Health Literacy Wisconsin, a division of Wisconsin Literacy, Inc., joined the Health Communication, Health Literacy and Social Sciences tweetchat to explain their process. Erin manages statewide health literacy interventions in partnership with Wisconsin Literacy’s 63 member literacy agencies, community-based agencies and health care organizations throughout Wisconsin. The plain language health communication campaign, ‘Let’s Talk about Flu’ was conducted this past fall and winter of 2011-2012. During this short timeframe, 53 workshops served 921 adults with low health literacy. Funding and support came from Anthem BCBS and Walgreens and resulted in a lesson book, a 1-hour workshop and flu vaccine vouchers. According to Erin, a key to their success was “making the information relevant to participants’ lives.” Another vital component to success was delivering workshops in “trusted settings where people already live, work, study and socialize.” “Most participants were adults from our 63 member literacy agencies, who are reading below the 5th grade level. We also worked with populations in which there is generally a large overlap with low literacy, including [the] homeless.” Community based organizations often take shortcuts to save time and money. Pre-testing campaign content is often left out. In this case, Health Literacy Wisconsin didn’t skip this important step, they “pre-tested our lesson book with physicians, adult learners and adult literacy program directors. This was an essential step; we learned a great deal and revised our program and materials based on this feedback. We’re all rushed, but I think scheduling time for feedback and revision upfront saved us time in the long run.” “You have to prioritize. We were successful because we made some decisions about what was crucial data and what was not.” All their stakeholders were gathered together prior to developing their evaluation plan. And they followed the crucial advice to “begin with the end in mind!” By taking that advice, the results were worth sharing. With an 85% completion rate of the pre- and post-tests they found that flu knowledge increased from 56% to 83%. The participants intention of getting the flu shot increased from 74% to 83% and 42% obtained the flu shot (tracked through voucher system provided by Walgreens). The University of Wisconsin Extension Cooperative Extension pamphlet provided Erin and her colleagues with the tools and the self-confidence to do it right. As Erin assures other community based organizations, “it’s OK not to be research experts. ‘There is no blueprint or recipe for conducting a good evaluation.’ Make it work for you!” For further information check out Erin’s tweetchat and the University of Wisconsin Extension Cooperative Extension evaluation tools, especially their booklet.

Fighting the Stigma of Mental Illness

Suicide has increased (largely due to the prolonged poor economic conditions) [Medical News Today]

90%+ of those who die by suicide have a diagnosable mental illness. [National Institute of Mental Health]

One out of five people are dealing wth a mental illness in any given year… this means that

EVERYBODY KNOWS SOMEBODY who is living with a mental illness!

Of the 20% living with a mental illness, many haven not received any treatment largely due to the stigma!

Bullying and TV

Learning would be exceedingly laborious, not to mention hazardous, if people had to rely solely on the effects of their own actions to inform them what to do. Fortunately, most human behavior is learned observationally through modeling: from observing others one forms an idea of how new behaviors are performed, and on later occasions this coded information serves as a guide for action.”
-Albert Bandura, Social Learning Theory, 1977

I became aware of this show when I found my son watching a portion before I intervened.  I am not interested in promoting this type of programming but have placed a example of what I am talking about here.  I found the shortest clip I could find for illustration.  Bullying by physical intimidation occurred earlier in the program before this clip.

There are so many examples of this type of program.  For example, Disney had a cartoon called “Recess” that has been banned from our house.  In it, characters are verbally abusive to each other.

It’s been about 35 years since Bandura conducted his Bobo doll experiments.  In 1977,  Bandura explained observational learning that occurs via television with his Social Learning Theory.   Although his theory recognizes that learning the behavior through observation doesn’t  necessarily mean that the behavior will be reproduced, there is a huge body of research that confirms the negative impact on children and adults of observing abusive behavior.

SO, my question for those who produce this type of “children’s programming” is, why?  Why do you keep producing programs showing intimidation, stereotyping and bullying?  Are you unaware of the bullying epidemic?

Every day, 160,000 students skip school because they are afraid they will be bullied.

Several factors increase the risk of a child being bullied.  These include illness or disability, passivity, social phobia, agoraphobia, and higher levels and expression of general anxiety. Teenagers who are gay are often subjected to such intense bullying that they do not receive an adequate education.  Adults who remembered being bullied show low self-esteem and depression.

Does anyone else see the stereotypes portrayed in this program?  The effeminate male with the falsetto voice is clumsy, has few friends and is not admirable.  He is victimized by a bully, the larger male. 

When people wonder why there is such a large increase in bullying in the United States, I suggest they look at today’s line-up of television programs and stop buying the products that advertise on these shows.  Maybe that will get the point across…”we’re mad as Hell and we’re not going to take it anymore!”


Passion and Advocacy for Good: IpodTouch for Tele-Trauma

When it comes to innovation and passionate advocacy, Dr. Rafael J. Grossmann Zamora is a head above the rest.  As a specialist in Trauma and a Trauma Surgeon, he is on the front lines caring for and saving people who have been seriously injured.  

Unfortunately Trauma Specialists are few and far between.  And this fact is truly a matter of life and death for, according to Dr. Grossmann, “trauma is a disease of time. The quicker you’re treated the better your survival.”  Care by a Trauma Specialist increases a trauma victim’s  chance of survival by as much as 25%.

So what happens if you live in an extremely remote area of the country and you are injured.  Enter tele-trauma…And this is another part of Dr. Grossmann’s passion and advocacy.  He is dedicated to treating and saving people at a distance through telemedicine.  And he’s figured out a new, cheaper way to do telemedicine, through IpodTouch over Wifi.

The hospital where he works, Eastern Maine Medical Center [hence, EMMC],  in Bangor, Maine is the Trauma Center for a significant amount of rural Maine.    With only three trauma centers in the state, EMMC serves an area larger than Massachusetts, Vermont and New Hampshire combined. With such great distances, it can take as much as  3 to 4 hours in travel time to reach EMMC.   That lost time can lead to severe disability or death.

Although LifeFlight, Maine’s air ambulance service is excellent, “weather sometimes does not cooperate…remember, it is Maine!” Dr. Grossmann says.

Dr. Grossmann also points out that helicopter rides can cost upwards of $10,000 to $14,000.   “Our Telemed program covers 15 hospitals over 29K sq miles.  We get a call from small hospital looking for advice, pick inside pocket , tap and connect.”  It’s that easy.

“We are using a gadget designed for play, to potentially save lives, saving money along the way. IPod Touch…transports us to where the patient is to provide advice on treatment right away..via 2-way camera. It is a ‘virtual presence.’ We can’t be there physically, so telemedicine brings us to the patient and patient to us, instantaneously.”

Of course, it wasn’t always this simple.  The program is about 6 or 7 years old.  Getting buy-in from the smaller hospitals took time, “Lots of lobbying and convincing, with great results. Small hospitals love it because it gives them better access to us specialists.  Bringing us to where provider and patient are, virtual presence.”

Physicians have been wary of telemedicine because they believe the time they spend will not be reimbursed.   This is not a problem says Dr. Grossman who states that they are billing the “same as regular face-to-face consults according to new regulations.”

And there is no need for concern about privacy because the apps that are used are encrypted and HIPAA compliant.

Dr. Grossman and his team have been honored by the American College of Surgeons, receiving “Best Scientific Award” at the 2009 Annual Congress of the American College of Surgeons in Chicago.

“This could be a game changer, a paradigm breaker!” Dr. Grossmann enthused.  ” Tele-trauma needs to become common use.”  Dr. Grossmann does not make money on spreading the word about this approach, he just gets the satisfaction of knowing that if more hospitals use iPodTouch Tele-trauma, more lives will be saved and injured people will experience less disability.  He is so excited that he believes IpodTouch for Tele-trauma can be effectively used in other specialized situations where reducing the time to care saves lives.

Watch Dr. Grossmann Zamora in this TEDx talk to see how it works.

Alzheimer’s Disease

When you think about yourself…you think of your personal characteristics, how you look, how you feel.   And you think about the people you have known, your family, your friendships, locations,  where you have lived.  All those memories that make you, *you*.

http://www.effective-time-management-strategies.com/images/focus_on_the_family.jpg

Your body’s most important organ weighs just 3 pounds.  The brain.  The storehouse of memories.

More than 5 million Americans are losing their sense of who they are.  They are losing themselves.  Fifteen million Americans are watching this happen, losing their loved ones slowly.  They are the caregivers.

Alzheimer’s is a terrible, terrible disease.  For a terrific description of our brain and what happens during Alzheimer’s, go to the Brain Tour.  After you’ve had a quick review on that site, take a look at this video  (unfortunately not developed with Plain Language in mind) which also describes the processes.

Does it have to be this way?

My dear dear uncle is at this very minute suffering from bed sores.

http://www.mobilityspecialists.net/HomeMedicalEquipment/TherapeuticPressureReliefMattresses/PressureUlcers.aspx

Bed sores or pressure sores are horrible.  The skin completely disintegrates…losing layers of skin, exposing tissue under the skin. They are ulcers that are extremely painful and that can be very large.  They occur on skin that has had pressure on it for some time–skin of the buttocks, back and heels are common.  It happens to people who are extremely ill, who cannot turn themselves and must rely on caregivers to turn them, people who cannot take in adequate nutrition. Very vulnerable people.

Even though he has a living will with specific directives that say that extraordinary measures not be used to keep him alive, his wife has had to advocate for those directives to be honored.  There are many factors that are keeping him in the nursing home…one is financial-he has long term care insurance which will cover the cost of his care.  My aunt thinks that hospice care will not be covered by the insurance he has.  Another is that my aunt is elderly, overwhelmed and has poor health literacy.  Her nieces have been doing all they can, long distance, to help her understand all that is happening. But there is no one educating her and helping my uncle where he is.

My mother worked for years at a hospital to reduce the number of bedsores that occurred there.  At the end of her life she got a bedsore in that very hospital.  Hospice was never mentioned by her oncologist.  Also she feared losing the successful pain management that had been achieved at the hospital.  My sisters and I were at the hospital 24/7 to assure that she received the care she needed.  Unfortunately that didn’t help with assuring that she didn’t get a pressure ulcer.  She died in that hospital.

There are ideas for bringing discussions of End of Life and the care that is received out in the open.  One advocate for this is Alexandra Drane with her Engage with Grace website.

There are other advocates in this work: Kathy Kastner is one example.  She blogs at Ability for Life and is beta-testing an End of Life app.

What we need is to get all of healthcare–all patients (physicians and nurses are patients too)–talking about and thinking about how the end of life should be experienced.

Angels In Our Midst 2

Pinktober–never heard this word before starting to use twitter in October 2011.  Now I’ll never think of October in the same way again.  All because of the dynamism of one woman, Rachel Cheetham Moro.

Her advocacy  was born from painful experience and a desire to save other women.  Using her skills honed from a Masters Degrees in Business and Tax from Fordham University and experience working for Ernst & Young as an international tax consultant, this Aussie took on Big Pink, the Susan G. Komen Foundation.  Her summary of the financial shenanigans that are occurring at the Komen Foundation clearly illustrate why people the world over need to re-think their giving.

Yet while she journaled her struggle with metastatic breast cancer– her pain, both physical and emotional–she also gave voice to unsung heroes in her blog Can-Do Women.

A traveler, she visited 40 countries in her short time on earth, her wonder and love of life is apparent for all to see in her writing.  She continued writing even after losing the use of her arm–even during severe illness, she answered emails from people like me.

She has inspired me to continue to advocate for women with metastatic breast cancer and to work to change the Komen Foundation’s direction in its use of funds and to motivate others to support organizations that are really looking for a cure.

Rachel, thank you for being open and alive and giving to so many.  Thank you to her friends, family and her Beloved, for helping her to share her life, her intelligence and her wit with all of us.

 

 

Angels in Our Midst

“The joy of life after cancer”

is the tagline for Toddler Planet, a blog written by a beautiful woman.  Strong, brave, talented, brilliant, loving, funny:  these are words used to portray her.  Blessed is the word to describe us, the recipients of her words.

What happens in the world of Internet connectivity when a young mother, (34 years old), an astrophysicist, decides to stay at home with her children and occasionally consult?  She starts a chronicle of her journey.  She teaches and shares her knowledge of space and science with others through writing.  She has fun with her little boys, age 2 1/2 and 5 months.

“The joy of life after cancer”

The momblog that she creates is terrific: full of life, full of hope, full of the challenges she faces with a toddler and a baby.

Only when her mother-in-law is diagnosed with breast cancer, does the young mother pause.  She’s been so busy, so involved with living and giving.  She’s been breastfeeding her 5 month old since he was born but something is different this time around.  Why is her baby unwilling to suckle her right breast?  Why does it look “different”?

Doctors visits later she finds out that she has Inflammatory Breast Cancer; a rare and dreadful form of an already terrible disease.

Her answer to this diagnosis is to educate others, to let us all know of her journey.

“The joy of life after cancer”

She journals her feelings, her struggles,  her love, her delight in her children, her pain and she endures beyond the prognosis of the disease.  Even with bone metastases, there is still hope.

“The joy of life after cancer”

Chemotherapy, radiation therapy, exhaustion, clinical trials, pneumonia; repeat.  Four and one-half years…

“The joy of life after cancer”

Her final entry, written as a conversation between herself and her beloved husband, is  about bringing hospice into their home.

Go to her blog, learn from her, pray for her husband and little boys, read and share and advocate for a real cure for breast cancer.  And remember, the tagline

“The joy of life after cancer”

Susan Niebur died February 6, 2012. @whymommy

 

Memorial Day Weekend 2003

At four in the morning, she got a phone call from her sister-in-law, “Your husband is in the Neuro-Intensive Care Unit here.  You better come right away.”  She hurriedly gathered her 2 year old son and drove for two hours in a daze.  At the hospital, her husband was on oxygen, had tubes coming in and out of his body and was semi-conscious.  Family members were called and coming from all over the country.  Bewildered and confused she kept asking herself, how had all this happened and why?

Percent of adults who binge drink per state

Recently the Centers for Disease Control published a study  about binge drinking in the United States. According to the report, there are more than 38 million US adults that binge drink.  This over-consumption of alcohol occurs about 4 times a month with as many as 8 drinks per binge.

Binge drinking is defined differently for men and women.   For men the number is 5 or more alcoholic drinks or women 4 or more drinks within a short period of time is binge-ing.

The average largest number of drinks consumed by binge drinkers on an occasion

Although the 18-34 year old age group contains the most binge drinkers, adults 65 and up binge drink the most often.   Another interesting fact is that the income group with the most binge drinkers makes more than $75,000.  Yet those earning less than $25,000 drink the most during binges and binge drink the most often.  Finally, most of the people who drink and drive are binge drinkers.

A traumatic event is obviously something out of the ordinary.  According to experts, we all have “templates” created by our minds.  They are our “expectations,” what we assume will happen based on repeated past experience, basically the established routine. You don’t  have a “template” for a traumatic event. It is completely random, outside anything familiar.  That means it requires a lot of cognitive energy to interpret.

At 4 in the morning, my friend’s normal routine is to be in bed, fast asleep.

Her husband survived the automobile accident with the 19 year old girl who’s blood alcohol level was .19%.  That 19 year old ran a red light and T-boned the other driver’s car.  She’d been binge drinking and  she walked away from the accident unscathed.  He still lives with PTSD and physical results of the accident.

Resilient?

Just a random thought…

Have you heard people say

Children are resilient…they bounce back…don’t worry about them…?

I have and I just want to say to those people

If children are so resilient, why are so many adults in therapy?

Save A Life

This time of year reminds me of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students. One day, mid semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up. Irritated, I put on my stern face and asked that he stay after class.  Something, perhaps a guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth. “I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.” “In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes. I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation. There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  is a gift that you can share; with knowledge you can become an advocate for yourself and others. Mental health literacy is vital…it *can* save a life.

Wanderings in Puerto Rico #EOL

A  breeze keeps him cool in the tropical sun as he plays.  Impishly he smiles at his sister, then makes a rush at her.   He almost catches her, the little lizard wriggling in his grasp.

 ¡ Prisa!  hermana… o me voy a poner un lagarto en la oreja.

¡ Mira! El lagarto va morder el lóbulo de la oreja y colgar al igual que un arete.

¡ Ejecutar!

End of life, Spanish pours from his mouth as he speaks to his wife of almost 50 years.  He has never spoken to her in Spanish in all their married life.

The long-term care insurance doesn’t pay for a great place to keep him but she doesn’t know what else to do.  While feeding two other patients, a nurse’s aide says, “Good thing you feed him…there are too many mouths to feed for me to deal with him too.”

He’s thin, thinner than ever before.  She feeds him bananas…they make him smile.

Me encanta la canción del Coquí.  ¿Lo oyes?

The bed sore is getting worse, his skin is breaking down…he’s stopped walking…he has sepsis.  The list goes on and on…

It’s snowing outside….He’s hanging on…his body just won’t let go of this life.  She loves him but wishes he would leave because of the pain…his pain…her pain at watching him leave her.

The sun feels good on his face.  His island home welcomes him, whispering

Ven conmigo.

*For a dear one…I love you!

The Power of Play, Part 2

Children will put in over 10,000 hours of video gaming before the age of 21.  How do the video game producers keep people playing?  Can health communicators harness the power of gaming by applying game mechanics to our campaigns?

These two questions have been nagging at me and I have found some answers.   Following up on “The Power of Play” blogpost, this post will explore gamification (applying game psychology to non game environments) further.

Why do we keep coming back to games and spending hours acquiring points?

Games are created from the ground up to engage us.  They are make believe.  Game producers create an experience.  The best video games are created around story that is meaningful to the player.  Saving the world, or at least the environment created by the producer, is the overarching goal of many video games.

Mastery is the experience of being competent , of achieving something.  This experience is at the core of what makes any good game fun and engaging.  The producers of video games also create a rule system to master.  There is a clear overarching long term goal and what is called a structured flow of nested goals.  For example, the long term goal is to save the world, a medium term goal is to kill the monster, to do that you need to obtain coins so a short term goal is to collect 5 coins.  Mastery is fun and it is addictive.  We crave learning: overcoming obstacles and then succeeding.  Joy lies in the tension between a risky challenge and the successful resolution of the challenge.

And this leads to a discussion of flow…Does the game have flow?  Flow means that it is neither under-challenging or over-challenging.  If the game is too easy the player becomes bored.  If it is too hard, the player experiences anxiety and frustration.

One of the tricks is to have frequent easy challenges that allow the player to savor their mastery but also have sudden spikes in difficulty.  The goals that are created need to be structured so that at each level it gets a little bit harder to reach the next level—for example, the player needs to earn more points to reach the next level  Another part of the creation of a game is to provide lots and lots of positive feedback when mastery occurs.

When creating a game, knowledge of your users is critical.  Games are tested and prototyped and retested.  Finally, successful game producers help us feel that we are playing rather than working.  Working is something that we are forced to do; playing is something we choose to do voluntarily.

One of the things that keeps us playing is that they aren’t reality.  They are make-believe.

Yet our vigor, our fitness, our physical condition is our reality.  A person’s body and a person’s ability to function in the world are all reality.  Health is reality:  seeking good health or increasing good health or motivating healthy behaviors are all real world endeavors.    And games mimic reality… as we play our games we are always looking for points to increase our hero’s health so that s/he doesn’t die and we don’t lose.

I believe that this is where a game creator who is interested in improving health could plug their behavioral messages.  When the player loses health, opportunities that are real world oriented, could be implemented to gain it back.  The most important part is that this needs to be tightly integrated in the “make-believe,” bringing a player back into reality makes educational or health games preachy

Again, incorporating research into the creation of a game is critical, test and retest to determine what your players want in a game will make it a successful and fun experience. Losing play means you lose your players– the strength of games is the power of play.

Unlocking the Individual’s Ability to Care for Themselves*

“The “biggest value [of connected health]* is in unlocking [the] individual’s ability to care for themselves!”  So says Joseph Kvedar, MD, Founder and Director The Center for Connected Health, a Division of Partners Health  in Boston, Massachusetts.

#HCHLITSS, Health Communication, Health Literacy and Social Sciences twitter chat started 2012 with a bang.  With our guest, Dr. Joseph Kvedar, participants entered into a thought-provoking and engaging conversation.

Dr. Kvedar is an innovator in the use of new technologies to connect health care providers-physicians, nurses, pharmacists and others-with patients.  Using remote health monitoring tools, the Center is involved in helping patients manage their chronic disease and engaging people in their own health and wellness.

To get the chat started and get everyone on the same footing, Dr. Kvedar (@jkvedar) answered the question, What is connected-health?

Connected health is “creating a new model of healthcare delivery by leveraging IT to move care from the doctor’s office into the lives of patients.”  The way to achieve this change in healthcare delivery is [to provide]“objective information about you, presented to you in context, surrounded by the factors that motivate you to improve your health.”

Motivation or engagement comes from the “objective info about you.  [It] holds everyone in the conversation to the same objective standard and aids in reality and accountability.”

Feedback seems to be a powerful motivator.

“Feedback loops offer active reflection, sentinel effect and ability to take action.  [With] info[rmation] about health, indiv[iduals] can ch[an]ge behavior.”

One program the Center is known for involves home monitoring of patients with Coronary Heart Failure (CHF).

“Home monitoring for CHF is a terrific example of integrating patient, nurse and physician to achieve health at home and [at a] low cost. …We’re expanding our CHF program to include acute MI (myocardial infarction) and other cardiac conditions. [We] already do HTN (hypertension or condition of chronic high blood pressure)… CHF – p[atien]ts [are] responsible for daily weight, bp[blood pressure]/hr[heart rate]. [This information] goes automatically over phone line. Nurses view dashboards,[and] do exceptional m[ana]g[emen]t.”

Another innovation developed by the Center involves improving medication adherence.

“The RX [Prescription] vitality glow cap first glows, then chimes. [It] r[e]m[in]ds U to take med[ication]s. Improved adherence by 68% in our trial!

Dr. Kvedar notes in previous presentations that there are certain people who are more likely to want to be involved in connected health.  They are truly engaged in knowing their numbers, for example, how many steps they take in one day or how many calories they use in one hour.  He calls them the “Quantified Self” population.  During the chat, he was asked


“How can connected-health get beyond the Quantified Self population to a more generalized population?” 

He believes that this can happen by “1) understand[ing] patients and their motivations; 2) giv[ing] them simple tools to track and understand the data 3) empower[ing them] to take ownership.”


Who will drive connected-health (or m-health) physicians or patients? Or pharmacists or nurses? 

                “All of the above, but mostly patients,”


Will the volume of baby boomers help “force” a move towards telemedicine if hospitals cannot meet demand?

 “I don’t know if boomers will be the sole catalyst, but something outside the system will be the tipping point.”


Another mover in the connected-health arena may be large businesses.

“Several global fortune 500 firms are getting into CH [connected-health] as we speak.”

One participant noted, “one day, soon, connectivity is gonna prove its[e]lf to be cost-effective and improving outcomes. (or: are we there yet?)”

Dr. Kvedar agrees that we are “very close to proving the value of connectivity… Especially in the context of ACO (Accountable Care Organizations).”

Following up on this comment, Dr. Kvedar was asked if our present health care cost crisis will be solved by innovation occurring outside of traditional healthcare delivery system, Dr. Kvedar replied,

“My hypothesis: the cost crisis cannot be solved from within. each dollar saved is a dollar of someone’s income lost… MDs are the last to come on board, but with new payment models, they are coming on board. 80% ready in our IDN (Integrated Delivery Network).”


Dr. Kvedar’s passion or vision for connected-health (which he admitted was tough to do in 130 characters) is

“Empower consumers to be their own doctor. It can be done.” Then he clarified by saying that “of course there will always be a need for providers. We just overuse them now.”


Although there was some enthusiasm about connected-health, participants voiced real concerns.

Concerns about connected-health that were raised by participants included:

                The digital divide:

                “Health literacy and literacy as part of the digital divide”

                “Low tech communities need most help”

“Those who are rural are the ones who may need this kind of distance support the most”

Cost of technology for the poor: “When I see personalized medicine- I think medicine for those with “resources” only”

Use of hands, eyes for text messaging

“The age ceiling to connected health”

“Risk of increased disparities”

                Where is the desire “for telemedicine in #diabetes?”

Participants also proposed solutions and or disagreed with  these concerns:

“Digital divide can be addressed several ways: provide access in clinics, libraries, community centers, or provide print “

“Use existing communication resources in the community to engage/ distribute info[rmation] this is when the value of partnerships with community health leaders and advocates becomes more vital”

“Projects provided to many people have cell phones-programs such as text4baby.org by the National Healthy Mothers. Healthy Babies Coalition can help”

“Actually at least in much of the #US, even the poor have dumb cell phones, and most have basic texting, least from what I’ve seen”

“In developing countries mobile phone technology developed where there were no landlines everything now moves on new platform.”

 Although this statement was challenged “For many in developing countries-local comm.[unity] leaders (word-of-mouth) [is] still [the] most effective source of med[ical] info

Others suggested more ways to use connected-health:

“Encouraging mentorship in online communities is a very powerful tool to give more power to the patient and their loved ones


Participants also provided useful information on the use of technology for those who have a disability.

The chat provided a forum for information exchange and opportunities for further discussion.  Finally, there was generous sharing of information among the participants. Many thanks to Joseph Kvedar, MD and all the participants in #hchlitss chat.


Wonderful links were provided by participants:

The Center for Connected Health http://t.co/quTwGzdg

Dr. Kvedar’s blog http://t.co/gnni5SC6

UC Davis eHealth Broadband Adoption: http://t.co/62wbn5Fl bridging the divide

California Model E-Health Community Awards http://t.co/Dywo8Q9s

In Canada, the Telemedine Network http://t.co/CauUkO6v has made great inroads connecting /helping esp with mental health

Also need a connected healthcare workforce where needed, when needed & tech to get them there http://t.co/Bjg0dIiX

Recent blog post ?: Can connected work in a fee for service model, or more movement in integrated system?http://t.co/wlGfzSc5

Telcare review from Walt Mossberg. WSJ tech writer with type 2 diabetes. http://t.co/vhQsSSHj

Scottish Centre for Telehealth and Telecare http://t.co/Ncfd0ICv

Project Echo- promoting care for complex diseases in rural and underserved areashttp://t.co/v3OZSDEM

Non traditional entrants into connected-health http://t.co/alxEdh5r

MyVoice is for aphasia and stroke http://t.co/byXDK5W5

Ipad apps for kids with autism @thinkingautism @shannonrosa

*Due to the twitter’s 140 character requirements, comments are shortened by eliminating articles or using shorthand.  [Braces] are used throughout this summary to enhance readability.

*Previously posted at #hchlitss  New youtube videos have been added.

Motivated by Love

Dr. Susan Love’s Breast Book  was our “go-to” book when my mother was diagnosed with breast cancer.  We were able to understand the pathology reports because of it.  I know that we (my family of sisters) were all reassured by knowing there was someone “out there” researching and trying to find out more about breast cancer.  She has done so much to teach about breast cancer.

Now Dr. Love is trying to connect researchers with women.  An Army of Women

That’s right, if you have two X chromosomes you can participate!  She wants 1 million women to participate.  You don’t have to have had breast cancer, or even be related to someone who has had breast cancer, to participate.  All you need to do is sign up and answer a few emails a month.  I’ve signed up and I hope you will consider signing up as well.

Here is a video created by a twitter friend, who is a breast cancer survivor, that explains more about it.

Dance Like No One’s Watching

Do you live each moment unflinchingly?  Do you taste life the way you do the last bite of your favorite food or savor  its essence as you would the fragrance of summer’s final gardenia?

Crisp…the deep blue of an October sky…exhilarating…the ocean spray on a winter day… vibrant…the ecalls of cardinals in April…fresh…the laugh of a toddler

What if you were with a group of people who are all present…all noticing?

What if you were with a group of people who were all searching for three words to express this sense of be-ing and capture it?  Instead of New Year resolutions, finding three words to live by…

That’s what happened January 2, 2012 ….Soul Speech.

When you hear soul-speech, or in the case of a tweetchat, read and interact with people whose hearts are singing, you are lifted up and changed.

Soaring the stratosphere, the group that tweet under the hatchtag #bcsm, reached for Jupiter as each shared the three words that they will use as guideposts for 2012.

Stales: T3: Cancer’s taught me that the vision and goals will always change. Very few things in life can be “planned

Itsthebunk:  I’ve had it 3 X since 1994, so there’s been a LOT of evolving & personal growth. Still hard2 figure out where it fits in my “identity

Ihatebreastcanc: I used to think bc happened to “older” people or “other” people. But not me.

Bcsisterhood: T3: I was the girl who did EVERYTHING right & I still got breast cancer. James’s death again reminded me the best laid plans go south

#bcsm stands for breast cancer and social media…many of the participants have had cancer in one form of another…although most have had or are experiencing treatment for breast cancer. Some participants are or have been caregivers of someone who has cancer.  The participants of #bcsm are welcoming and not picky…they are supportive of each other and anyone else who wants to participate.

Their three words have meaning;

JediPD: “Serenity” covers all: conquers fear[,] builds courage[,] inspires elegance and calm

Lauriek: “Love”, “hope”, “bravery”

BethlGainer: Peace, perseverence, courage

JackieFox12: Mine are create, nurture, appreciate. I love this three-word concept. Resolutions are too much like homework.

BRCAinfo: love community peace

DrAttai: : My words were resilience, rejuvenation, and serenity

MaverickNY: T1: mine are rebuild, refresh, renew

BCsisterhood: Three things you need to survive most anything: God, guts & perseverance.

Brandie185: 3 words … I’m bad at this kind of thing, but I’d go with celebrate, enjoy, heal.

Now, pick one of your 3 words… and expand on that… What does that word mean to you and your vision for 2012?

jodyms: Discernment: making the most of what matters. Don’t sweat the small stuff

itsthebunk:I’ve used 2, 3-word phrases, which works 4 me. It’s all about emerging from the past & being back out in the world, building anew.

JediPD: We all live lives of uncertainty. Have Long term goals and short term plans. Buy green apples. Watch the sunrise. Smile. Live!

BCSisterhood: combo of “courage” & blind faith, & ability to *really* feel that I can have “it all” too. Being the phoenix & soaring

BCsisterhood: RT @jorunkjones@AllThingsCrgvr Yes, I hope to giggle my way through much of this year. Giggle, half full glasses & an open heart

When asked about making resolutions…

Bcsisterhood: @stales T2: We all have the resolution to live life and be healthy, but the truth’s a little scary because it’s out of our hands

Debmthomas: @stales T2 looking at a whole year can be daunting to anyone, ESP cancer survivor, so think for the next 24 hrs I will do …..

Annwax: @lauriek There is no reason why you asking to live well in longer terms, That is the human nature, and everyone wants that

Jackiefox12: T2 I don’t know if resolutions were harder to keep as survivor but I know they didn’t get easier. I’m not a fan of resolutions

Jodyms: T2: Each year makes the resolutions — or the three words – become more meaningful. Done with anything that’s extraneous

Chemobrainfog: T2 goal setting, yes I have goals but I still try to stay in the moment.

Jackiefox12: @BCSisterhood You know what they say, If you want to make God laugh, make a plan. But plans are important.

stales: T2: I set a mini one each night: That I get up the next morning, put two feet on the floor, & go

BCsisterhood: I’ve opened my heart to the possibilities of a new year & I’m looking forward to being surprised, pleasantly, I hope

Allthingscrgvr; T2 One day at a time, one foot in front of the other

How has (or did) cancer change your vision of yourself? Have you developed a new one yet?

Feistypbluegecko: T3 and I know longer take so much for granted, am more proactive

Jodyms: @JediPD I think we are, too:) I love watching what happens here every Monday. Cancer stinks. But talking about it w/friends rocks.

Bcsisterhood: @jackiefox12 Our resiliency knows no bounds. Mankind can, and does, survive the most horrendous things

Feistybluegecko:  Some goals can help us, building our strength for the times that might not be so easy, and giving us heart for when times are good 🙂

Annwax:  Life is a roller coaster ride, thr r times when u are on the top, and then u are on the bottom, you must stay on the ride of wellness

Feistybluegecko: For me, having these goals has been a reminder to make the most of good times, appreciate the good things

Annwax: Finding contentment in what you have, may help the uncertainty of what might come.

Jodyms: @talkabouthealth @jediPD – this is something @being_sarah and I discussed earlier: take time for tea, and looking for Jupiter.

Stales: FYI, jupiter is just below the moon tonight, go look!

Jackiefox12: T3 I learned I’m more resilient than I thought. And less squeamish 🙂 not sure that’s a vision!

Debmthomas: @jodyms love that, I write out what my “perfect week” would be like, what elements I need to feel good, then work them in

Jedipd: What a wonderful family of friends!

Chemobrainfog: just saw Jupiter wow!

Feistybluegecko: T3;) cancer shook me to the core, confronted me with reality of mortaity, made me take stock so I decided to recalibrate and refocus

Lauriek: T3- So much changed when I got cancer. Still struggling to find the new “vision” – 6 years post diagnosis and 5 years post mets

jackiefox12: My advice if in tx: it’s part of you, not all of you. You have love & laughter, family & friends. Be sad or mad or glad but be you.

Debmthomas: @stales …I was just thinking tonight that any day can be the first day of a new year, each day has great potential

Stales: Let’s make a plan to revisit our Three Words for the first #bcsm chat in July of this year! Okay? Deal!

Stales:  Good night, Moon! RT @chemobrainfog: Good night, Jupiter?

And they have fun!***

Does your soul speak?

Heart Song, Soul Speech, Dancing like no one’s watching…try it.

** My three words Dr Attai

***Shaping 2012 with 3 words

*** I can’t do it justice here.  Please visit the website to read the transcript!

Hunger and Health Literacy

Do you believe that a child is personally responsible for going hungry over a weekend?  The thinking person would say, of course not.

  •  Did you know that when a child goes hungry over a weekend, they are not able to learn until Wednesday afternoon?
  • Did you know that children facing even moderate nutritional vulnerability are hindered in their cognitive development?
  • Did you know that hunger can:

                           … slow growth…

                           …increase illnesses, like colds and

                               infections…

                           …lower concentration and

                               alertness in school…

                            …inhibit brain development?

OK, these are the results of children going hungry over a weekend.  There are more than 17 million children in the United States at risk of hunger.

Are those children personally responsible for what is happening to them and their brains and bodies?

Children who have had this happen do not recover the lost cognitive capacity, lost health, lost school time.  Reasonable, otherwise generous, people suggest that growing up poor should not be an excuse for poor choices.

In a recent article in Time Magazine, “Child hunger is robbing us of the best of America’s imagination and ingenuity,” said the report’s author, John Cook, Ph.D., of the Boston Medical Center and Boston University School of Medicine, a nationally-recognized expert on child hunger. “Sustainable economic recovery depends on freeing children of the burden of hunger and malnutrition and supporting their optimal growth and development.”

Unfortunately success and failure in the US are too often attributed to the individual.  We become so focused on individual responsibility that we forget other realities.  For example, under-nutrition before the age of three fundamentally changes the neurological architecture of the brain and central nervous system, harming a child’s ability to learn.  If the brains of children are harmed by hunger and if we want to prevent poor health choices and health behavior in adults, then we cannot let anyone grow up in socio-economically disadvantaged situations that include short rations.  That is the only way to fairly expect decision-making that is healthy.

“The impact of child hunger is more far reaching than one might anticipate. Child food insecurity creates billions of dollars in costs to our society. Child hunger affects a child’s health, education and job readiness,” said Cook. “Our best universities are graduating more students from other countries and fewer from the U.S. because we are failing to prepare our children to learn and develop their best skills, creativity and abilities.”

There are things you can do to help!  One mom saw a need in Guilford County, North Carolina and started BackPack Beginnings.  This 100% volunteer organization is trying to reduce childhood food insecurity, one child at a time.  Check out the website, Feeding America and take action!

Patient-Centered Medicine Part 2

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

Women, Care-giving and Health Literacy

Health literacy is essential to care-giving in the 21st century. The term health literacy is confusing because we can be highly educated yet still have poor health literacy.  So what is health literacy?  It’s about understanding complex terminology.  It’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

Health literacy is important for us as healthy women, but is it also critical for our family. As women, we are the caregivers in the family. According to a 2001 study, 80% of moms were responsible for choosing their children’s doctor, taking them to appointments and pursuing follow-up care. Moms were also responsible for making health insurance decisions and for caring of the extended family.

What happens when women are not health literate? We are less likely to receive preventative care, such as a mammogram or PAP smear. If we don’t seek important screening tests, we find diseases like breast or cervical cancer at later stages.  Indeed, women with low health literacy are more likely to have chronic conditions like high blood pressure, diabetes and asthma and have difficulty managing these conditions.

Women with limited health literacy often lack knowledge or have misinformation about their body. Without this knowledge, we may not understand how and why diet and physical activity are important in reducing the risk of certain illnesses and conditions. As the ones who take on much of the dietary responsibility of families, we need to know what is good for all of us and why.

If women are not health literate, we may also miss important information during critical health decision-making. In situations that are highly emotional, such as a diagnosis of cancer, it is difficult to recall and understand what has been said. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them.

If one is not health literate, the situation may be more dire. In one study, 80% of breast cancer patients with low health literacy made final decisions about their therapy after only one visit with an oncologist. When researchers compared these patients’ expectations about their  chance of a cure to that of their oncologists, 60% of the women had overestimated their chance of a cure by 20% or more.  While overestimating one’s chance for a cure might not be a bad thing, not getting a second opinion could be disastrous.

A common complaint is that physicians do not explain illness and treatment options in easily understood terms. There is often a mismatch between a patient’s and physician’s expectations and understanding.  Again, studies detail patients’ misunderstanding of common medical terms. When patients were tested for their understanding of words found in transcripts of physician-patient interviews a large variation in understanding occurred. While 98 percent of patients understood the health term vomit, only about one-third understood the word orally, 18% understood malignant and just 13 % the word terminal.  In this same study, the physicians thought they were actually switching to everyday language when communicating with patients.

Unfortunately those with low health literacy are less likely to ask questions of their physician. This is tragic. The people who need more help actually receive less. What can you do to become more health literate? Read and learn about  your health condition. Talk to other women with similar conditions. Talk to your doctor, nurse and other healthcare professionals. While at the doctor’s office, you can try the simple technique called:

Ask Me 3.  The program encourages patients to understand the answers to three questions:

“1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?”

Taking these three questions with you during a doctor’s appointment, writing down the answers and making sure you understand everything that is said to you are ways to make a difference. If you think that the appointment will bring bad news, take a friend or family member with you. Don’t leave the physician’s office confused. You have the right to know what is happening to your body.

A National Emergency: Horrible Death for Older Man With Autism

Update: There has been a horrible event in California: This is a matter of LIFE AND DEATH. Isn’t everyone supposed to be cared for? Basic Police Work Ignored

The US Centers for Disease Control says that the prevalence of children with Autism Spectrum Disorder is one in every 110 children.  The CDC’s 2007 report describes children born between 1992 and 1994.  Those children are now aged 17 to 19, in other words they are about to “age out” of the school setting.  Extrapolation of the numbers means that approximately 1,495,264 will soon be adults with autism in the United States.  There are thousands more uncounted adults with autism.

As many as 40% of those with autism are completely nonverbal. In 1975 Congress passed the Education for All Handicapped Act.  Now called the Individuals with Disabilities Education Act (IDEA) it expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Families of children with autism have come to rely heavily on the services that are provided by public schools.  Unfortunately the daily hands-on special education services provided free by university trained public school teachers end upon the student’s graduation.

Absolutely no services are mandated by the Federal Government for those children with autism (now considered adults at age 21) after they leave public school.

The families of adults with autism are faced with finding help where there is little help to be found.

Until the early 1990s, autism was said to be a rare disorder, approximately four per every ten thousand births.   Scientists believe that it is caused by a combination of environment and genetics.

Whatever the cause, there is awareness of autism among the general population but not realism about autism.The reality is that there are children and adults with autism that are severely disabled.  Some of these individuals require round-the-clock, 24/7, eyes-on vigilance.  Unfortunately, some families cannot cope with this kind of care at home. Sometimes these children have no family.

Prior to the 1980s, the only choice for families with children with severe autism was placing their loved one in a state institution.  There were almost no community services available except a few private schools or day programs for individuals with mental retardation. The staff at these private programs and at state institutions were not trained or experienced in working with people with an autism diagnosis. Often those presenting with a diagnosis of autism were refused admission.

Although there is much that was good in the de-institutionalization movement of the 1980s, there was an unfortunate side-effect.  Communities were supposed to fill the gap left by the institutions.  That hasn’t happened.  It costs over $75,000 per year for round the clock care for one adult with autism and expenses can go as high as $200,000 per year per person.  Who can afford this?  No insurance company covers the annual expenses of long-term care.   Most families have to rely on Medicaid to cover this expense.  Unfortunately in most states, the Medicaid that covers physician visits and medication is not the same Medicaid that pays for residential care.

The Medicaid program that pays for residential placement is a limited program called the Home and Community-Based (HCB) Residential Waiver.   Having Medicaid doesn’t automatically mean you have the waiver.  Unlike the mandatory services under I.D.E.A, the Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement. What is available for people with autism who need residential services?  Not a lot…More in a future post.

The Power of Play

Why do gamers spend hours amassing points for rewards that don’t really exist?  

Because games are fun.    What does this have to do with health communications?  Health communicators are trying to use game mechanics to hook people into doing things that will improve their health.  That’s right:   instead of being preachy, there is an effort afoot to make losing weight or increasing physical activity enjoyable.  By coupling a system of incentives with any number of efforts to improve health , health communicators hope to make doing a new healthy behavior fun and “addictive.”  Getting people to begin a new health behavior is difficult…that’s where the fun comes in.  Making it ‘addictive’ is critical because one of the major problems for any behavior change initiative is maintenance:, that is,  how can we find a way to keep people from backsliding, losing their momentum and quitting the behavior? Gamification is the new buzz word.  Why is gamification so fashionable?  It makes sense.  Let’s look at human beings.  According to economists, we are loss averse, favor immediate gratification and are overly optimistic about the future.  What this means is that the risk-oriented messages that are part of traditional health interventions really don’t convey.  Investing in your future good health or relating present behaviors to the future just doesn’t have as much impact as the immediate rewards of the behavior.  For example, even though you know smoking that cigarette can cause cancer in the future, you still smoke it because it tastes great with your first cup of coffee. According to health game aficionados, since people are more interested in reward in the present than what will happen in the distant future, communicators need to think out of the box.  This is where the structure and reward system of games comes in. With games you can invent immediate gratifications for behavior change, you can offset the configuration of time of action and payback around desirable health behaviors.   Here are some ideas to keep in mind when making a behavioral intervention, at ,for example, a workplace, into a game. The first is KISS…keep it simple means choosing one task or behavior and focusing on that.  Second, it is important to find out the key motivators for the audience. What can you do to integrate their motivators into the game? Relatedness, or an individual’s need to feel connected socially or to a group is a powerful tool that is used.  This is also related to a person feeling valued by things outside his or her self.
Third, incorporate the opportunity to work together if there is a desire.  The group size is important, apparently 8 is the magic number to get things to happen.Fourth, allow people to advance through levels and acquire points as individuals and as teams.  Fifth, use social and monetary equivalent rewards. Be sure to reward based on information on motivations.Sixth, be creative and use narrative themes to keep interest. Finally, provide rewards/incentives at regular intervals but then add to the game some surprise rewards.  Surprises work and keep people interested.

An innovative use of game mechanics is the Biggest Loser Minnesota Challenge.  The Alliance for a Healthier Minnesota partnered with RedBrick a company located in Minnesota to create the game. More than 22,000 Minnesotans participated in this statewide health program.  Altogether they lost 75,000 pounds. Now that’s a powerplay!

Low health literacy may lead to poorer health

I started a group on LinkedIn called Health Communication, Social Marketing and Social Scientists.  Recently there has been a long discussion over health literacy.
When discussion among health communicators over health literacy becomes a debate over individual responsibility versus social responsibility, you know there is a problem. Maybe it’s just that the United States hasn’t and won’t ever get beyond its Puritan roots. Or maybe there is a true misunderstanding of the terminology and the research. So let’s start with definitions.

Healthy People 2010 defines Health Literacy as: “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”

The term health literacy can be confusing because it is not just about reading.  In fact, it is about an extremely complicated skill set.  Conversational competence, that is,   the ability to listen effectively, articulate health concerns and explain symptoms accurately is part of health literacy.  Health literacy encompasses decision making and analytical abilities.  Tasks that are required of people using the healthcare system include evaluation, analysis and interpretation.  Locating information and being able to assess its quality is essential.  Being able to do mathematical calculations and to judge risk are also part of health literacy.

Therefore, people who are highly educated and functioning well in our society, people who are “reading literate” may be “health illiterate.”  What this means for our society has been illustrated in study after study.  A recent review of the literature confirms that those with poor health literacy are more likely to have poor health outcomes.  Poor health literacy is an economic drain on our society with studies focusing on chronic conditions such as asthma, diabetes, heart disease and cancer (Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999; Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002; Schillinger, Dean, JAMA, July 24/31, 2002; Norton, A. Reuters Health, July 19, 2011).

Colleagues decrying individuals who choose to leave high school without graduating as the source of the health literacy problem in the United States are missing the point.  Colleagues who state that because there is so much free information “out there” it is the individual’s responsibility to understand it and use it effectively,  also do not understand what health literacy is.

From Bewitchment to Genetics: Cystic Fibrosis and Emily’s Entourage

“If it tastes salty when someone is kissed on the brow, then this person is hexed” (bewitched).”

“The child will soon die whose brow tastes salty when kissed.”

Cystic Fibrosis and Emily’s Entourage

Bewitched children…with salty skin died.   For centuries, children with Cystic Fibrosis lived short, terrible lives.  It took until 1954 for something to change. On learning the devastating news that their son and daughter, Lee and Kathy, had cystic fibrosis, two parents, Milton and Evelyn Graub, decided to do something.  Perhaps empowered because he was a physician, they found other parents, held their first fundraiser and in 1955, and founded what is now the Cystic Fibrosis Foundation (CFF).

Because of the research funded by CFF, the life expectancy of people with cystic fibrosis is now 40 years.

A 29-year-old Powerhouse

Emily Kramer300Enter Emily Kramer-Golinkoff, a 29 year old powerhouse who is determined to transform cystic fibrosis (CF) from a disease people die from to one that people live with.

Since birth she has been the focus of teams of health care providers because, as she states, “CF is an intrinsically entwined part of every single second, every single breath [of my life]…My health is part of every moment:  and care is what allows me to engage meaningfully and productively in all of this, my life.”

Social Connection Heals

Her journey with the healthcare system hasn’t always been easy.  For eight years her medical team ignored her life and her feelings with the result that it
disengaged me from my healthcare team and …made me emotionally distance myself from CF.  My goal was to minimize CF in my life and that is a dangerous goal for something that is intrinsically entwined in every fiber of your body.”

Her life changed when she moved to an adult CF treatment team.  This medical team listened and worked with her, integrating her care with her life. “I’m very fortunate to have a healthcare team that respects me, encourages my active participation in care and treats me holistically.”  But she is firm in the belief that luck should have nothing to do with receiving this type of care.  “I’m not okay relying on luck to find collaborative healthcare providers. Everyone deserves to be heard, valued, empowered in healthcare. I’m using my story to advocate for the enormous benefits of collaborative, socially connected care and participatory medicine.”

Social connection is crucial to health and healthcare, Emily maintains.  A little known fact about <a href="http://hchlitss.net/2014/06/20/transcript-chat-emily-emilykgkramer-golinkoff-cystic-fibrosis-research/”>CF is that people with CF cannot be together.  Those with CF produce mucus in the lungs.  That mucus holds onto infectious agents.  This is not a problem for the general population but it is a big problem for those with CF.  “Support is vital for dealing with chronic, fatal diseases. It’s really tough when your fellow disease compatriots are your biggest threats from a cross infectious standpoint. “  People with CF can pass on infections to each other with catastrophic and fatal consequences.  Social media has brought her together with other people who have CF.   She “stumbled upon an online CF community about 5 years ago and it changed my life. For the first time I realized other people were dealing with the same things.  Online community is my only safe lifeline [to other people with CF]. The online CF community provides invaluable information and support. “

And her medical team values her social media community–“My doctor now asks ME about creative treatment options I’ve heard of through the online CF community.”

Knowing Genetics

Protein_CFTR_PDB_1xmi250CF is the result of a gene mutation on the 7th chromosome that is responsible for producing CFTR.  CFTR is a protein involved in the transport of sodium and chloride or salt.  Changes in it effect systems in the body that produce fluids, like the digestive and the respiratory tract.  In 90% of people with CF, the pancreas degenerates and is replaced by fibrous cysts.  The lungs accumulate thick mucus, and bacterial infections eventually destroy the lungs.

Emily has advanced-stage CF and CF-related diabetes. Advanced stage CF refers to the degree of permanent lung damage that has occurred.

Although the Cystic Fibrosis Foundation has done outstanding work in moving the life expectancy of people with CF from age 2 to 40, “they are focused on the masses, the nearly 90% of patients that have the same mutation called df508.”  Unfortunately Emily’s mutation is different.  Though CFF does fund research for rarer mutations, the “majority of emilysentourage250their efforts are appropriately on the most common CF mutations.”  This is why Emily, her family, and friends have established their own nonprofit, called Emily’s Entourage.  “With Emily’s Entourage, I’m using my voice to try to direct research attention to rare CF mutations.”

In 2 ½ years, Emily’s Entourage has raise over $650, 000. “Those funds go towards accelerating research with a focus on rare CF mutations.  Currently we’re funding trailblazing work at UCSF that is focused on my rare mutation. We’ve been very fortunate to have wonderful researchers helping to drive Emily’s Entourage’s mission forward.  The aim… is to find new treatments and ultimately achieve control/cure for everyone with CF.”

In a post on the entourage website, Emily describes the reality that those who are healthy often forget, “The truth is that life is fragile and tenuous for everyone, but I think those of us with CF and other life-threatening illnesses live with an acute awareness of this reality every single day.”

Even so, she dreams.

First published on LinkedIn.

To learn more about Emily’s Entourage, visit their website at www.EmilysEntourage.org or connect with them on Facebook (www.facebook.com/emilysentourage), Twitter (www.twitter.com/emsentourage4cf) or Instagram (www.instagram.com/emilysentourage).

 

Based on the Health Communication, Health Literacy and Social Science #HCHLITSS Tweet Chat.  To learn more visit http://HCHLITSS.net

Why Parents MUST NOT Stop!

mental health special needs

Parents of Children with Special Needs

I am constantly amazed at the bravery of some parents who are activists for their children in schools in the US. There are so many exhausted parents looking desperately for help in a place that is mandated by US law to help, public schools.

“I Am Adam Lanza’s Mother” Blogger Reveals Regrets, Hopes For Mental Health Care

On May 30, 2014, WBUR -Boston interviewed a mother who wrote a post a year ago called “I Am Adam Lanza’s Mother” last year.  Her post went viral and she and her family were in the glare of the media’s spotlights.  Here is her interview:

http://cache.wbur.org/audio/player/news/2014/05/30/i-am-adam-lanzas-mother-blogger-mental-health

mental health special needsLook at the Comments

I read the interview and then I looked at the comments. WOW! The comments are powerful! Here are a few and I will add them as this post evolves.

Ellen Chambers • 2 hours ago
There is another culprit in our society’s long-standing failure to address the needs of individuals with mental health disabilities (and other disabilities that can sprout mental health implications when not properly supported): our public schools.

Like it or not, schoolchildren with special needs have a legal right to educational services that will prepare them for further education beyond high school, employment, and independent living. Like it or not, these services must be delivered in a manner that allows them to make progress at a rate commensurate with their innate cognitive ability. Like it or not that means school districts must address a student’s mental health issues that impact on that mandate. That’s the law. If you don’t like it, it’s a free country, you can lobby Congress to change it. Until then, that’s the law.

The reality, though, is very different, and therein lies the problem (actually, therein lies the ticking time bomb.) Public school districts in Massachusetts (and nationally) violate students’ special education rights at an alarming rate. According to the Massachusetts Department of Elementary and Secondary Education (MDESE) between July 1, 2011 and June 30, 2012 there were 715 such violations recorded in the Commonwealth. Those are the violations that were discovered… the actual number is hundreds of times higher.

We’re not talking about pesky little paperwork violations. These are substantive violations that have an immediate and negative effect on the lives of students with special needs and their families. Some of these students present with primary mental health disabilities, others develop secondary psychiatric issues due to years of preventable academic struggle and failure and the the emotional battering that goes along with that. Tens of thousand of Massachusetts students with disabilities are failing at rates far out of proportion to their innate abilities. Anyone wanting the numbers to prove this can contact me privately at emchambers@charter.net

I am working a Massachusetts case right now involving a 15 year old boy with primary diagnoses of autism and obsessive compulsive disorder. This young man has great potential, he is not cognitively impaired. However, his autism makes it very difficult for him to control his behavior. Over the past year his behaviors have escalated alarmingly, despite the best efforts of his family to work with their local school district to address them. He has had two psychiatric hospitalizations in this year alone because he presents “a risk of harm to others” according to the hospital. His psychiatrist, who has treated him for over two years, states he “has had a significant increase in sexualized and assaultive behaviors, self-injurious behaviors, and verbal threats towards others.” His pediatrician who has treated him for 13 years has written to the school stating his “autistic symptoms present significant and imminent danger of serious bodily harm to both himself and those around him.” The school district has received similar letters from many others involved in his care, and all have recommended he be placed immediately in a residential school equipped to work with him.

This wonderful young man, through no fault of his own, is a ticking time bomb. Why? Because his school district has turned a deaf ear to the warnings of multiple clinicians, and has ignored it’s legal obligation to properly educate him. Meanwhile he, his family, and his community are, today, in “significant and imminent danger of serious harm.” The school committee, school superintendent, school special education director, and the local police have all been notified. Despite all of this, his family’s only recourse is to hire a lawyer at many thousands of dollars (which they don’t have) to take their school district to a hearing to force them to comply with the law.

I spoke with the school district last week and pointed out that this case is not at all unlike those of John Odgren, Adam Lanza, Phillip Chism, and Elliott Rodger. Still, they refused to place him in a residential school. They gave no cogent reason for their position.

A tragedy could very well be in the making here, everyone knows about it, and NO ONE is doing anything to prevent it. And, God forbid, if something tragic does happen, I can assure you the school district will not be held to account. We have a broken, dangerous, mental health system. That’s well known. We also have a broken, dangerous, public education system that has flown under the radar for decades, inflicting damage every day.

Ellen M. Chambers, MBA
Special Education Activist
Massachusetts
(978) 433-5983
emchambers@charter.net

MarionKing • an hour ago
Ellen, Thank you for such a clear and compelling discussion of this issue. I have experienced the failure of my public school to address the needs of my children, one of whom has mental health needs secondary to his autism diagnosis, and the other of whom has a primary diagnosis of mental illness and a rare, complicated physical disorder.

I also heard Liza Long speak yesterday in Marlboro about stigma, and speaking out, and about how her state’s Child and Family protection services provided her with a horrific ultimatum.

My advocacy on behalf of my children and as a the Vice President of the Board of Directors of SPEDWatch have been used against me by my school district and the legal system, as if advocating for all children, my own included, was somehow indicative of some parenting flaw.

The world has gone mad.

The sooner that parents, educators, first responders, elected officials, social workers, medical and mental health providers, aunt and uncles, grandparents and siblings, friends and neighbors, in short, all of us, shout from the rooftops that schools and mental health systems must collaborate and actually MEET the needs of our children, the sooner we will have an end to the stories of Adam Lanza, Elliot Rodgers, Ellen’s young autistic client, my children, and many more.

Marion King, Foxboro MA
http://www.spedwatch.org

Schools on Wheels: Helping Homeless Children in Massachusetts

A few years ago I spoke with a group of mothers who were concerned about their children’s school.  The neighborhood they lived in is called “transitional” and the school had an 85% turnover rate.  That means that 85% of the children who started school in the beginning of the year didn’t finish the school year in that school.  One hundred percent of the children received free breakfast and free lunch and it was the policy of the school to leave any left over cereal boxes out for the children to take home to share with their family for dinner.  

Moving to Massachusetts, I’m always struck by the wealth that I see around me.  The libraries are filled with books, the public school my son went to last year kept begging families to request free lunches so that they would qualify for Title 1 status.  YET, poverty is real and  homelessness exists in Massachusetts.

Recently WBUR, one of  two public radio stations in Boston (the other is WGBH, another sign of the wealth of this area of the country) had a story that I want to share.  It is about homelessness and school.

The statistics are staggering.

 

schools on wheels banner The story was about a teacher, Cheryl Opper, who read about the work of Agnes Stevens.  Agnes started Schools on Wheels in 1993 in Santa Monica, California.  It is a volunteer tutoring program to provide academic stability for homeless children.

In 2004 Cheryl started Schools on Wheels of Massachusetts in her kitchen where she trained volunteer tutors that she recruited from local universities.   She worked with 20 children from two family shelters.  From these humble beginnings,the program has served over 1700 children and has logged in over 24,000 tutoring hours.

Here is the radio interview about this program.  Please listen and learn more.

The cardiac miracle cure? Vitamin C, lysine and Dr. W. Gifford-Jones

There are charlatans out there. Beware of Vitamin C and lysine and Dr. W. Gifford-Jones. See the post below from Carolyn Thomas of HeartSisters.

The Ethical Nag

It all started with a simple question from one of my blog readers at Heart Sisters.  Another heart attack survivor asked me if I’d heard about the use of high-dose vitamin C and lysineto prevent or reverse coronary artery disease, a treatment duo often touted in health food stores. It turns out that almost any Canadian who reads any daily newspaper across our great country has likely heard of these particular supplements, thanks to a syndicated health columnist named W. Gifford-Jones MD whose columns have been published in over 70 newspapers in Canada and beyond.

He’s a University of Toronto- and Harvard-trained MD and author whose bio also includes “family doctor, hotel doctor and ship’s surgeon”. (That’s not his real name, by the way – which is Ken Walker).  In one of his columns published in the Windsor Star in December, the 89-year old…

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Legacy of Love: Jayme’s Fund For Social Justice

In early 2013 I had the opportunity to work with a small non-profit in New Hampshire.  Working with the artwork of a young girl who died tragically, I got to know her mother, Caren.  Caren thought that she wanted to change the website she had had for the 10 years since her daughter’s death.   Unfortunately,  attempting to change the website was too great an emotional challenge for her.

I created this video for Jayme’s Fund for Social Justice as well as a prototype of a new website that can be seen here.

 

Beginnings and Endings

April 1st remembrance

Health Communications and Health Advocacy

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my…

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Facepalm

Please look at the list of to-do’s in this blog post!

The Sarcastic Boob

You all know my feelings about Susan G. Komen (see my commentary here, here, and here).  And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.

Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands.  It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.”  In 2010, Komen legal counsel, Jonathan Blum said

“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure…

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Lumley’s Lucky Day

In second grade my son Daniel had an assignment, to write and illustrate a story. He was worried about it so we went to the North Carolina Zoo for inspiration. Daniel wanted to photograph the animals and borrowed Dad’s phone. At the alligators’ habitat, he leaned in to get a good picture and dropped the phone. He was devastated. We tried to comfort him and joke about what was happening in the alligator habitat. Lumley’s Lucky Day was born. Mom spent some time revising and creating illustrations in Adobe Photoshop and after a few years, Lumley’s Lucky Day has been published on Kindle. Please take a look and enjoy it! Share this with your friends.

Patient Advocate–Pat Mastors

Empowered Through Loss

Creating A Patient Advocate

patmastors1patient advocatePat Mastors’, patient advocate, “medical awakening” came with the tragic loss of her father. “My father, an otherwise healthy 76-year-old, fell down stairs at home and fractured vertebra in the neck. Surgery to fix it went well. But his intestines burst two days post-op. Later we learned it was from C.diff.”

Clostridium difficile or C. diff is a bacterial infection that “is most commonly associated with health care, occurring in hospitals and other health care facilities where a much higher percentage of people carry the bacteria,” according to Mayo Clinic’s website. It is easily passed along via spores that last on surfaces for weeks or even months.

Because of this hospital-acquired infection, Pat’s father survived only six months. “As a reporter, I felt people needed to know how easily unintended harm happens in even the best hospitals. Plus as his advocate and only daughter, I wondered if I’d known more, could I have made difference? I’ve been working on it ever since.”

Simple Communication is Needed

Having been a television newscaster taught Pat “efficient, simple communication of critical information empowers people to make informed choices.” Applied to healthcare she believes it transformative: “cultivates a more responsive and transparent system.” Her journalist’s training opens her mind to the many sides of any story, “I have spent years doing my best to understand the entire landscape and all the players in it. Nothing’s simple in healthcare!”

What You Need To Know Before Going Into the Hospital

Through her patient advocate research Pat’s gleaned five of the most important things someone going into the hospital need to know:

1) The third leading cause of death in the US is errors and infections. “Up to 440,000 are killed per year.”
2) “Ask your surgeon, “How many of these have you done? What’s the infection/complication rate? You learn a lot by how s/he responds.”
3) “Bring an advocate! Don’t go it alone.” Pat recommends a firm, non-adversarial professional who knows how to deal with people.
4) Understand that shift changes and “hand-offs” to other staff, are the time when errors happen—“things slip through the cracks.”
5) “Take notes, speak up if you see disconnects.”

Have Your Family With You In Hospital

Knowledge is power, and Pat knows firsthand that this is the case. Suddenly her daughter, who had walked the Appalachian Trail, was in the hospital. Jessica came down with a rare paralyzing nerve disorder called Guillain-Barré syndrome (GBS). In GBS a person’s own immune system damages their nerve cells, causing muscle weakness and sometimes paralysis. “The challenge was to get the best from modern medicine, AND the best HUMAN investment from us, clinicians, input from other advocates, research, nutrition, etc.” Pat and the whole family were at Jessica’s bedside. “With shift changes and handoffs, we (family) were the only constant. We helped keep clinicians’ focused on her.”

Her family’s presence helped. Pat tells the story of one of many interactions which show the difference that can be achieved by having the family present. Jessica was having a radiological test and her pain medicine was wearing off. Pat asked the technician about getting transport back to Jessica’s room. She was told it would take as long as it takes for Transport to arrive. “I asked “how long before Transport gets here”?” The Chief of Radiology overheard the “I don’t know” answer and he himself wheeled the gurney! “This does not happen if you are not there to look them in the eye….” Pat says. “All doctors and nurses feel good when they are being human and kind with you… There are just so many distractions, WE FAMILY members’ presence reminds them.”

With the efforts of all the players, (physicians, nurses, family) focused on Jessica, she was out of the hospital significantly earlier than projected. “In 7 days (instead of 23), fully recovered in 3 months (instead of 6-12),” Pat states.

The Patient Pod

ABOUT-Patient-Pod-image-alone-102.5-kb Patient AdovcateMaking a difference for others is part of Pat’s advocacy. She created the Patient Pod. “I created it to bring patients hand hygiene, access to personal items, plus a way to take and store notes, post message (like “patient white board”) and keep discharge stuff organized. I wanted patients to have autonomy, dignity, things comforting and familiar, in a place where nothing you touch is yours.” In addition, the Patient Pod includes a plastic sleeve for the TV remote control, one of the dirtiest items in a patient’s room.

Design to Survive

She is also writing. Her recent book as a patient advocate,Design to Survive, proposes the IKEA model for theDTS-New-Cover Patient Advocate healthcare setting. She shows how a “model of partnership, savings and shared responsibility serves both provider and consumers worldwide.” As her table of contents points out:

“If IKEA designed health care…

1. We would always feel welcome

2. Instructions would be understandable to a 5th grader

3. A one-stop website would help us learn, connect, and plan

4. We’d get tools for success when we walked in the door

5. We customers would have to roll up our sleeves and help

6. Prices would be clearly marked…and we’d pay our own bills

7. The team that serves us would act more team-like

8. Hackers (the good kind) would thrive

9. It would live to innovate.”

Pat believes that simplicity saves lives and in that simplicity the patient’s voice is essential. “Patients/consumers need to speak up where appropriate, take time to give feedback, good and bad. Doctors, nurses are under the gun for performance: when they go the extra mile, write their bosses! If care’s poor, tell that, too.”

Pat Needs Your Help to Help Others

Presently Pat is looking for funding to educate more patient advocates, “We need more opportunities for the patients voice to be integrated into all aspects of care. The problem is, who are ‘Patient Advocates’? We’re self-defined, like ‘travelers.’” She believes that Patient Advocates need more professional development opportunities “so we can bring not just stories, but tangible and actionable take-aways to our audiences.” If you have any ideas for funding this endeavor, please comment on this blog post or at Pat’s Blog.

This post was developed from the transcript of #HCHLITSS chat December 19.

First published on #HCHLITSS Health Communication Health Literacy and Social Sciences.

2013 To 2014: Rekindle Another’s Spirit

In everyone’s life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer

Blogging for a company, Medivizor, and writing for the Health Communication, Health Literacy and Social Science Tweetchat #HCHLITSS website has kept me so busy that my own website has seemed adrift.  Yet life has rushed along…filled with helping our little family settle into a new place! A move from North Carolina to Massachusetts…Gosh,  I’m now listening to predictions of snow…at least 6 inches…and I feel fine!

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You can always tell a real friend:  when you’ve made a fool of yourself he doesn’t feel you’ve done a permanent job.  ~Laurence J. Peter

There have been some lonely times but my real friends have decided that I’m not such a fool as they may have thought, but never voiced.

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I never had a policy; I have just tried to do my very best each and every day.  ~Abraham Lincoln

This is all any of us can do…to do our very best and I think reaffirming this at the end of one year and the beginning of the other is an important ritual that I begin now.

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Education is the most powerful weapon which you can use to change the world. ~Nelson Mandela

I am ever excited by the idea of always being a student, asking questions and learning.  I believe that any effort I can make to educate others or to include them in my continuous “studenthood” is worthwhile.

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I learned that courage was not the absence of fear, but the triumph over it.  The brave man is not he who does not feel afraid, but he who conquers that fear. -Nelson Mandela

Fear is ever present for anyone who is looking for employment, or relocating, or caregiving or connecting with and/or loving others.  I pray that this coming year I can recognize fear and conquer it.

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Happy New Year 2014!

 

Infographic

When Patients Share Internet Health Information With Their Physicians

This is an infographic that I created to describe a short “survey” that I conducted for a week in October, 2013 while working for Medivizor.com. The full description of the survey is found here: How Patients Discuss Internet Health Information With Their Doctors.Infographicpatientmaybe2

Halloween and Domestic Violence Awareness Month

vintage-costumes-1953Lesley Pratt Bannatyne, explains that Halloween has changed. Prior to the 1970s, costumes for this children’s holiday featured astronauts, doctors, firefighters and nurses, allowing children to dress as heroes or people they aspired to become. Or they were of clowns, cats and dogs.  Then in 1968, the movie industry cancelled the production code that stopped the use of obscene imagery. More and more graphic movies and more horror movies resulted including the 1978 release of the film Halloween. It was the first time that Halloween had been directly equated with horror cinema, says Bannatyne, and the association has stuck ever since.

After October 31st, Halloween, has come and gone, may be a perfect time to post on Domestic Violence Awareness Month. What does this celebration have to do with Domestic Violence Awareness? Why is there a need for awareness? Perhaps because we are often unaware that our neighbors, friends, family are living their daily lives in the fear and horror that Halloween seems to celebrate.

The Health Communication, Health Literacy and Social Sciences asked participants to share their insights on Domestic Violence.

Dr. Gia Sison thinks that “Awareness is key to having a major impact and long term effect on domestic violence. Along with awareness we need the victims to start speaking up, to empower them to make a stand against it “

Annete McKinnon, patient support advocate, believes this awareness month is needed because “Domestic Violence isn’t always evident. “ A friend was being physically abused and yet, “I believed my friend when she said she kept having accidents.” Andrew Lopez a nurse sees awareness of domestic violence as crucial, “Domestic Violence, Intimate Partner Violence is filling up Emergency Departments in a vicious cycle….Unless awareness is raised of Domestic Violence, the vicious cycle will repeat itself, over and over.”

One in five women are raped at some point in their lifetime; nearly half of women in the US experience sexual assault other than rape. Yet only 60% of domestic violence and intimate partner violence incidents are ever reported to the police.

“Here in the US, we have to make it safe for them to stand up, and they have to be heard and believed!” Darline Turner, physician assistant working with pregnant women, states. “I see reports all the time where partner violence is not taken as seriously because it happens within a relationship. “

Lopez agrees, “Yes, many suffer in silence, never reporting domestic violence, never getting the help they need. We can talk about filing Restraining Orders, pressing charges, but the risk of escalation is ever present. “

Dr. Sison confirms that, “it turns out to be a vicious cycle when the abuser is enabled and … the person being abused makes excuses for the abuser, enabling further abuse. By encouraging them to speak up, people help them go through recovery, then they can help prevent others from becoming victim.”

“Unless the victim comes forward and agrees to press charges,” Lopez said, “the hands of police and healthcare professionals are tied.” Yet Turner feels that it can be difficult to get the victim to act, with “the emotional abuse that typically accompanies the physical abuse. These women are really beaten down!

Once a victim is beaten down emotionally, its really hard to get them to speak up or even admit there is a problem.” “The head trips that often occur make the abused feel like its their fault, like they deserve it. That’s much of the shame.” Natrice Rese, patient advocate said, “ victims feel they brought it on themselves. [We] need to change that, empower.”

What is the impact of domestic violence on health?

recent study in Iowa found adults with 4 or more adverse experiences as a child to be more likely to have diabetes and heart disease! People who experience rape or stalking are more likely to report frequent headaches, chronic pain, difficulty sleeping, poor physical and mental health. The same Iowa study found abused adults are 4 times as likely to have obstructive pulmonary artery disease .

Lopez stated, ”it leaves long lasting, often permanent emotional scars.” Dr. Sison agrees, “Psychiatric health is very much affected leading to major depression in most cases.”

Turner descries the generational nature of domestic violence, Many kids who grow up in abusive homes grow up to abuse or be abused. Unfortunately, there are high rates of domestic violence against pregnant women.” Jen Romnes entered the chat to agree, “It impacts children. I am a child of domestic abuse. Colours my world view. Just finished memoir.”

Patricia Anderson, a librarian and domestic violence survivor advises, “Don’t pressure them or make them feel forced. [It] took me decades to write my story. I did not realize I was a battered wife until I’d been divorced a year. Your brain just doesn’t apply that context to your own life.” Anderson further explains, “Remember, it isn’t always PHYSICAL violence. There is sexual, economic, social, and emotional. Someone might think they are not a victim because the violence wasn’t physical.”

People who are abused experience a great deal of shame, Turner believes. “Somehow we have to impress upon the victims its not their fault. So much stems from “I should do, I should be better.” Lissanthea Taylor, a physical therapist said, “Shame needs silence to grow, shame correlates with so many other physical and mental health issues. [It’s important to] open a context for talking.”

RV Rikard, sociologist, brought up the salient point that men are also victims of domestic violence. In response, Turner relates her experience as a health care provider for a man, “I once treated a man who was being beaten by his wife. When I figured it out, he was mortified that I had found out and begged me not to say anything to anyone. He stopped coming to the office. I wonder what happened to him? Men are far less likely to disclose the abuse or report it. This is even worse in same sex couples.”

Among the 70% of women who experienced domestic violence and then told someone about it, more than 1/2 (58%) said no one helped them.

If over 1/2 of victims told someone and didn’t get help…what does that say about speaking up? Alisa Hughely replied, “ It say WE don’t know how to listen or we are not equipped to give effective help it’s our job as HP’s to meet people where they are at- not what we think they must do.” Yet Romnes points out, “It’s hard for victims of DV to get help. Not only is their safety at stake, but children’s safety too.”

Having been a victim of domestic violence Anderson is one of the people who does act to help. “I always had a reason to not tell. If no one asked, I wouldn’t tell. But who would ever ask. I was so lucky. Someone did listen, did help. Now that’s something I do. I always ask. I always follow up. And having been a victim, you can spot it easier. Educating needs to include how to spot victims and NOT become another abuser.”

Three out of four (73%) parents with children under the age of 18 said that they haven’t had a conversation about domestic violence with them. That is a dangerous strategy because approximately 9% of high school students report experiencing dating violence in the form of hitting, slapping, etc.

Lopez suggested a video for all women over the age of 13 called “Just Yell Fire.”

Compared to homes without guns, the presence of guns in home is associated with a 3-fold increased homicide risk within the home. Homicide risk is 20 times higher where previous domestic violence exists and there is a gun in the house and homicide risk connected to gun ownership increases to 8-fold when offender is an intimate partner or relative of the victim.

These are just numbers until it happens to someone you know. Anderson said, [My] “Friend had a friend with a restraining order against her ex. He showed up on her porch with a gun and killed her. Really distressing. My friend never got over it. Adding insult to injury, the killer only got five years in prison.” Romnes feels that there needs to be a change in expectations and increase the penalties for the abuser. “Flip the losses from the victim fleeing with just a shirt on her back to the abuser bearing the hardship. The abuse will stop if the abuser becomes controlled as penalty for acts of violence: flip the power imbalance.”

Many worry about the impact of domestic abuse on children. Those who are abused are equally concerned as Anderson notes, Anderson said, “I never ever hit my kids. Found other ways to discipline. They didn’t like them either. There are ways. I looked for mentors in good parenting, intentionally made friends with people in good marriages.”

Rikard shared a domestic violence and fathering intervention program .

What can we do to prevent domestic violence? “Keep talking, keep communication lines open, watch for signs,” Natrice said. “Awareness, awareness, awareness,” Dr. Sison advises.

What do we need? Not a holiday that celebrates scaring people with graphic and horrible costumes, masks and decorations, but an open discussion of the fears and horrors that are perpetrated every day on families, friends and loved ones by abusers.

To check out the quotes on Domestic Violence take a look at these links:

More work to do against domestic violence
http://www.ctpost.com/news/article/More-work-to-do-against-domestic-violence-4882569.php

Study Ties Early Trauma, Health Risks
http://www.desmoinesregister.com/article/20131014/NEWS/310140060/Register-Exclusive-Study-ties-early-trauma-health-risks?Frontpage&gcheck=1

http://www.ncjfcj.org/sites/default/files/DVAMFactSheet%202013.pdf

Being Invisible Girls

What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up?

“I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudden the little girl looks right at me.  So  I hold my hands out and she climbed on my lab and she fell asleep,” Sarah Thebarge remembers.

That one action changed Sarah’s life.  “There are so many people in this world who feel lost, broken and rejected.  And so if I can do anything, even the smallest thing, to make someone not feel that way, I’ll do it,” she says.

Who is Sarah Thebarge?

sarahthebarge640She’s a writer, physician assistant, and graduate of Yale who, at age 27, was diagnosed with breast cancer.  “I was doing laundry and I put all of my white clothes in the wash…  I was just wearing a white t-shirt….All of the sudden if felt like a raindrop had fallen from the ceiling.  And I wondered if something was leaking up there.  I looked up at the ceiling and then down at my shirt and there was blood on my shirt.  I went to the bathroom and lifted up my shirt and sure enough it was bleeding…Only masses cause blood to come out and I knew I had cancer.”

Only about 1000 people are diagnosed with breast cancer before they are 30 and their cancer is often very aggressive.

Sarah’s story turns grim as her diagnosis of ductal carcinoma in situ, which Mayo Clinic says is “the earliest form of breast cancer,” returns as invasive cancer, a year after a bilateral mastectomy. And then it recurs twice:  once ,during chemotherapy.

During this period of time, Sarah’s boyfriend broke off their relationship; she had to drop out of her second masters program (this one at Columbia); a friend died of cancer; and, a truck hit her car. “EVERYTHING went wrong during chemo.”  Sarah got sepsis and nearly died.

A small town girl from a small town near Lancaster, Pennsylvania, Sarah had no family history of cancer.  Her father is a fundamentalist evangelical Baptist minister and her mother a homemaker.  “I …had to wear dresses to my ankles, couldn’t cut my hair, no woman in my family had ever gone to college.”

She describes her growing up this way. “I was raised in a pretty conservative home. My parents tried to balance…love with toughness.  As a little girl, I was really afraid… I was afraid that God was just waiting for you to mess up and then God would smite you. I was very focused on the rules and my impression of God was, if you kept all the rules you were on God’s good side and good things would happen and if you broke the rules, even the smallest infraction, then God was going to punish.”

But Sarah overcame her childhood to be the first woman in her family to attend college and graduate school at not one but two Ivy League Schools.   Cancer stopped her.  So, after the turmoil of treatment in Connecticut, she decided to sell all her possessions and buy a one-way ticket to Portland, Oregon.

She’d been in Portland almost a year, “I was still pretty broken,” she relates; when she opened her arms to a three year old girl on the Max.book_launch_slide  “It was rush hour I was sitting on the Max reading and this Somali woman gets on the train with 2 little girls.  And the train is really crowded…mom finds a seat and she has a chair for the 4 year old. The 3 year old doesn’t have a seat and this little girl was trying to sleep. Standing between her mom’s legs.”

While holding the three year old, Sarah struck up a conversation with her mom.  Before getting off the train, Sarah learned where they lived.  Fortuitously, before getting off the train the three year old put a pair of dice in Sarah’s hand.  “I went to their apartment to return the dice because I didn’t want this little girl’s first memory of America to be of someone who had tricked her out of giving up her only game.”   She entered their apartment to find mom and five little girls eating moldy bread dipped in ketchup.

“When I went in I realized how they were living.  Which is this totally dark apartment, no furniture, they didn’t have dishes, toothbrushes, nothing.  They just had the clothes on their back. The most dire thing was that they had run out of food…The mother was dumpster diving behind the Safeway giving her girls anything she could find to eat.”

Part of their difficulty came from illiteracy. “They’d gotten food stamps. But mom didn’t know how to use an oven.  So she spent all the food stamps on supplies to make Somali cakes (like cornbread). She can’t read, so she thought the word “broil” on the oven meant “on”  She put all the cakes in the oven to bake them, but it was on broil, so all their food scorched in a few seconds.  And there was a month before they got new food stamps. So she ended up dumpster diving.”

Sarah pieced together their story.  How mom and dad had fled Somalia’s genocide, how dad had abused mom and then left the family in Portland without money.  How mom had no job skills, didn’t know the language and had no support to help her raise five little girls. “She looked the way I’d felt when I first got to Portland…tired, scared, sad…  I thought… if it was the other way around…if I were dropped into Somalia under those circumstances…And I decided if someone found me in Somalia like that, I’d want them to HELP ME. So that’s what I did.”  She bought them necessities like pajamas, toiletries, food, clothing and her church chipped in furniture and dishes.

The “Invisible Girls” and Sarah are family now but it wasn’t an easy story.  Dealing with their first winter was just one more “new” situation they faced together.  Sarah describes one of these experiences this way,  “The first time I turned on their heat, the invisible girls ran around screaming that I’d set their house on fire!  They didn’t need heat in Somalia. So the only explanation for why hot air was coming from behind a wall was that there was a fire. And they knew that I was the one who’d started it!”

The book The Invisible Girls, published in April, details Sarah’s experiences as a cancer patient intertwined with meeting and connecting with this amazing Somali family.  The proceeds from the book are going into a college fund for The Invisible Girls.  Sarah recommends this book with, “I think it is an important read for cancer patients — to see that there’s life beyond the misery of treatment.  To see that it matters to the world that you try to survive (if that’s God’s will for you).”   Sounds like a book for everyone, doesn’t it?

The content of this blog post comes from the #HCHLITSS transcript from the Hashtag Project September 26, 2013 and from personal transcription of a radio interview on OPB conducted by Allison Frost on June 19, 2013.

Asking the Hardest Questions

Jessica Rice is an amazing woman who asks the hard questions.

stage iv

This week I was honored to guest post for Scope, the blog published by Stanford Medicine. The original post appears here.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The…

View original post 566 more words

Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

aacr

AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project

Anyone Can Get Lung Cancer

deanas photo“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”

The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190.  Deaths from lung cancer are estimated 158,480.  For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.

One reason for the high mortality rate is that lung cancer is difficult to catch early.  Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray.  In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.

Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%.  “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.

Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”

Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives.  Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.”  Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“

Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.

Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm.  Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate.  “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”

Deana’s determination is based in loss.  “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers.  Deana lost her mother just nine months after she was diagnosed, in March 2013.  As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”

Always talk. Always share. Always engage.

“Always talk. Always share. Always engage,” says Anton J. Gunn, Director of External Affairs in the Office of Intergovernmental and External Affairs (IEA) at the U.S. Department of Health and Human Services (HHS).

Mr. Gunn’s long title might put you off, but there is nothing off-putting about this energetic former college football lineman when he is talking about service.

Anton GunnAnton Gunn is a newcomer to Federal Government, joining HHS after serving as the go-to man in South Carolina during President Obama’s first election primaries.  He worked grassroots, going door-to-door to win voters and in the process came to the decision that he should serve in the South Carolina State House of Representatives.

Linemen are usually the largest players on the team.  Their role is to make a space for action, meeting obstacles and overcoming them.  Meeting obstacles–like winning a seat in the SC State House, in a predominantly white Republican voting district–seems to be his destiny.  In his present position at HHS, one of his roles is to cultivate and maintain relationships with national, state and local organizations.  With the Affordable Care Act (ACA) being rolled out, Mr. Gunn will be tackling many challenges.

Gunn’s message is engagement, “I am proud of our work on the ACA.  We have efforts focused on patients…There is no better way to get real answers to real questions than to make a COMMITMENT to engage with patients and stakeholders.”  And he believes that engagement will overcome some of the challenges in healthcare, “Challenges? Well, there are lots. Lack of literacy. Social norms. Culture all can make it difficult. But we can overcome them.  We have tools like the ACA that will reduce challenges in health care.”

October 12, 2000 marked a turning point in Anton Gunn’s life.  On that date, Gunn’s  younger brother, Cherone, a seaman serving on the USS Cole, died in the terrorist bombing that also claimed the lives of 16 other sailors. Motivated to enter the political arena, Gunn became an active community organizer and advocate, a leader in economic development and health care reform.

“Public engagement means that you are focused on those you hope to serve,” Gunn believes.
“It means what matters to them, matters to you.” His professional mission, articulated in The Audacity of Leadership: 10 Essentials to Becoming a Transformative Leader in the 21st Century released in 2009 is to bring, “”diverse perspectives together to solve world challenges.” People-to-people is the way to find answers, Gunn feels.

Gunn also believes that technology can make a difference.  “We have to embrace technology to get higher quality outcomes in health care.  Health information technology can provide a standard framework for all to attain higher health literacy,” Gunn states.

To illustrate, Gunn points to the investments HHS is making to reduce health disparities, via health technologies “HHS launched an app challenge titled “Reducing Cancer Among Women of Color” last August.  The winning app will provide users w/ info on screening & preventive services in diff languages & in culturally appropriate contexts.”

Persuading the public that the Affordable Care Act will make a difference is Gunn’s present objective. “The ACA will make health coverage available to millions who don’t have it now. That’s a big first step to helping them to get care. “  He believes that joining health technology and the ACA’s insurance coverage is a huge first step.

“Being able to afford health insurance has been a challenge. The ACA is changing that.  ACA means insurance reform, and health information technology means delivery reform. “

By meeting people where they are, Anton Gunn is trying to improve healthcare in the US. “The power to improve our health care systems is at our finger tips. Engage. Include. Respect and Empower patients and consumers,” he tells all stakeholders.  His plea to us is simple, “ Visit http://t.co/Rzbm1JeWHO, learn about the marketplaces coming in October. Help someone get covered.”

Based on a #HCHLITSS twitter chat with Anton Gunn on May 9, 2013.

Moms: You Are Not Alone

Lauren HaleLauren Hale (@unxpctdblessing)a two time postpartum mood disorder survivor who describes herself as having “turned peer supporter and  advocate for families struggling with Postpartum Mood Disorders [PMDs].”   She  also hosts #ppdchat  on Twitter for families struggling with PMDs.  She joined #hchlitss on March 1, 2012 to continue our discussion of mental health literacy.

What is PPD or Postpartum Mood Disorders? 

“A Postpartum Mood Disorder (PMD) is when a mother experiences psychological issues within 12 months of giving birth.  PMD issues can range from anxiety to depression to OCD [Obsessive Compulsive Disorder] to PTSD [Post-Traumatic Stress Disorder] or even to Psychosis, which is a medical emergency.”

One of the participants clarified that “PPD” specifically refers to “Post-Partum Depression.”

Does anyone have an understanding of the causes?

“Researchers are still working but many believe hormones are involved. [It’s]  not always the case.  [It’s] important to mention[that] thyroid issues, iron deficiency, and some vitamin deficiencies may simulate PPD symptoms.  [It is } important to rule out other causes before hopping on an anti-depressant.”

So is there any information out there that educates women about PPD?

There are several blogs, websites, and organizations doing wonderful work to educate women and providers.  Postpartum Support International is a great place to start. So is Postpartum Progress.

Peer support is a key component [to care] –[It] reduces[the] isolation in our struggle [which has a ] HUGE impact. “

A participant shared her “ favorite resource for info[rmation] and community regarding PPMDs is [Postpartum Progress] http://t.co/6wkvTaYF and #PPDChat [facilitated by Lauren]  is a hugely helpful resource in this area.”

Are medical providers uneducated about PPD/ PPMD?

“They can be – PPD/PMD is still not largely covered in medical training.  Also, peri-natal women see a large variation of providers which makes it difficult to narrow down education necessity.”

A participant noted that “It can also be really difficult to find a counselor/therapist who is knowledgeable [about] PPMD.”

Another participant shared that “family doctors are [need education].  [I] explained my symptoms,[my family doctor] never suggested beyond PPD and PPA [post-partum anxiety]. “

A third participant offered another example of her experience with a health care provider. “ I found it more harmful to see a counselor who was uneducated…than not to see one.  [They] blew PPD off.”

Yet another participant stated, “My PCP [primary care physician] would love more info on PMD, she says they are seeing more cases and have no information.”

In your opinion, what are the primary challenges women face regarding mental health literacy? 

“I feel the primary challenge with women and M[ental] H[ealth] Literacy lies with Stigma, particularly around birth.   I also think a large part lies in fear and the ‘just get over it’ mentality which permeates our culture.  Disappointment in how [the] birth went [and/or] traumatic birth can also factor into experiencing a PMD which leads to further stigma….”

“When you feel you have to suck it up and be “supermom,” things get worse.  [These are] definitely a few of the reasons women have trouble reaching out.   There are also (as with many) financial and insurance barriers to reaching out for help.”

A participant opined that “Stigma is the major problem for anyone with mental health issues.”

Another participant shared her experience.  “ The stigma expanded for me, as a Christian, with people saying crap like “Your faith is lacking” or “You need to pray more…. That sentence: “your faith is lacking,” is a key component in the downfall of my mental health and my marriage.   Lots of invalidation of feelings happens around birth and new motherhood.   If your experience is atypical, it’s confusing.”

Can you identify the challenges facing providers in dealing with moms?

Lauren answered, “Medicaid in most states only covers six to eight weeks post birth.   PPD typically occurs at two to three months.  One of the biggest [issues] – is not having a solid referral network set up in order to deal with moms who are struggling. Providers may also dismiss PMD symptoms as average “new mom” exhaustion. Providers need to dig deeper and don’t be afraid to ask questions if something feels off.”

One participant shared that, “There can be fear of CPS (Child Protective Services) being called, fear of job security, concerns for security clearance for military spouses.”

Another participant believes that,  “Friends/family members need to be targeted in education about PPMD …[They need to] not be afraid to ask questions and push new moms to get help.”

What are the warning signs? What do family and friends and new moms need to know?

Some of the signs are, “If a mom is not herself, sad and withdrawing, anxious, not wanting to be with [her] baby or is hyper-vigilant.”

Other signs include, “Psychosis [is the] most important to know – [if the mother is having] hallucinations, delusions, etc., [it is a] medical emergency, [and the mother should be taken to the] ER (Emergency Room) immediately.”

“Another important symptom is rage or anger.  [It is} Not listed [in] a lot of places, but MANY mothers experience it.  I think all parents worry about their children,  but ‘Intrusive thoughts’ are completely different and atrocious.  Intrusive thoughts are a component of Postpartum OCD, which is what I struggled with after my daughters.  My thoughts involved knives the first time around, suffocation, the second. [I] Became obsessive.

 “Yes, [the thoughts] can be very violent… and unprovoked.  With Postpartum OCD, though, a mother rarely acts on her intrusive thoughts.  She is immediately disgusted by them.  With Psychosis, however, these thoughts become logical and she is more likely to act on them.”

A participant offered a website address, “I also like Postpartum Progress Plain-Mama English’s list of symptoms, especially for new moms.  Plain-Mama English PPD/PPMD symptoms: http://t.co/RB0v8cF5.  PPD/PPMD can also feel like just not feeling anything. I felt numb a lot with mine.”

Lauren’s final thought was that, “It’s important for moms to know PPD/PMD is not something to be ashamed of…they’re not alone and there is help.”

Three Activists on Awareness Months

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?

 

Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.

 

AnneMarie Ciccarella (@chemobrainfog) started the discussion.

Speaking for myself and likely many others, October “awareness” has strangled advances in breast cancer…October breast cancer awareness is the greatest success story causing the MOST damage.  When started, it was important. Stigma attached to br ca had to be lifted. The radical surgeries had to be addressed… That was accomplished fairly early on. Now, it’s over 20 years of little **MEANINGFUL** progress and NONE with metastatic patients.  Speaking for breast cancer, we are AWARE, we’ve BEEN aware and it’s time to switch gears. too rooted in status quo & now very hard

                A participant asked, “Why is metastatic segregated out?  Why is there no progress?”

[Those with metastatic disease ]…are the dirty little secret .they taint the ribbon of success.  We’ve accepted “early detection” as good enough and it’s not. No new treatment advances. I had same chemo cocktail in 2006 as mom in 1987.  There is too much resource going to awareness, not enough for actual research.

I also make sure people understand there is NO CURE for breast cancer, it’s not a good cancer and even if caught early, there is no guarantee.

 

Katrina Moody (@katrinamoody) added to the discussion from the perspective of a mother of 3 children with autism.

“We promote Autism, Epilepsy and General special needs-related awareness efforts at the Café  (my site).

     She was asked if she felt that having a blog was “action.”

 It’s not – which is why I started the Awareness in Action campaign – to focus on ways for people to help.  The problem is that traditional awareness drives tend to concentrate on “awareness” but not so much on acting to help. I think it’s the difference between passive sharing and actual engagement.  Too many campaigns with no goals mean that there are lots of fuzzy pictures and sayings, hardly any action.   We still have the fuzzy pictures *grins* but are focusing on goals, actions for those involved to take.  We need to focus on action – help people see where they can take action in small and large ways.

Katherine Leon, a survivor of Spontaneous Coronary Artery Dissection (SCAD) also described her experiences with Awareness Months.

 

I have done one Komen Walk, supporedt our school autism efforts, work many hours with WomenHeart: National Coalition for Women with Heart Disease.”  This year, in March, I took heart health awareness to kids at school. Every day is a good day to focus on heart health.

With SCAD, [we are] attempting to do awareness and action at same time. Social media [is]key. I did awareness 5K for fund raising and a conference .

 

AnneMarie and Katherine realized that there is a difference between Breast Cancer and SCAD.

Katherine stated , “Right now SCAD is very grassroots. [We don’t have  corporate sponsors], so [we are] networking [to find]  SCAD survivors worldwide. “

AnneMarie remarked that she is concerned about the involvement of corporate sponsors in Breast Cancer Awareness Month.   “The pink stuff is all about the companies…  I am determined to change the conversation with breast cancer.  She summed it up, “SCAD needs awareness! We didn’t really need pink bats last Sunday, did we?”

One participant thought that  awareness months help find those dynamic people out there that are willing to help.

 

Katrina agreed that Awareness Months help in finding people with a newly recognized passion – the key is helping them act!

 

Another participant noted that,

“These campaigns are getting so complex and expensive that I’m not sure how much they yield for what’s important to patients. I think once “awareness” gets to be a routine yearly thing for each entity, it loses value.  The question is why do we do it. Are we truly not aware enough about breast cancer or autism? I think about the two w/o “months.  And all of the repetition inactivates me!”

 

When asked about taking action each guest contributed ideas.

Katherine stated that we

“Need to tie awareness to research.  SCAD Research is nonprofit educating/promoting/fundraising all at once. I really love RESEARCH.  Bob Alico, director of SCAD Research, says action comes from getting people to think “this can happen to me, [or] to my loved one.”

 Katherine initiated research in SCAD over a number of years.  She  motivated the  Mayo Clinic to  conduct research on SCAD.  “WomenHeart Inspire is key to “finding” survivors. SCAD survivors find  [the SCAD] group thru WomenHeart/Inspire, apply to Mayo research, learn about SCAD http://t.co/1tCXWqBE,

 

It is “Really frustrating when SCAD donations go to the general fund of the A[merican] H[eart] A[ssociation].  When you donate the Key is getting money to researchers, or at least organization with SCAD-specific program.

AnneMarie said,

“Find out “Who’s raising the money, how much is being donated and what is the charity doing? I  began to speak out about not being “a brand” for someone’s bottom line.  [I} Got active with Army of Women and Dr Susan Love.  Another thing I am trying to do is get the word out to be wise “consumers” with our donor dollars.

 “I don’t think people realize they can donate directly to researchers. I guess that’s the way I’ve been TRYING to take action.  [You] Don’t need to give money to any organization to take a cut . For example: they do high risk/high reward research and you can SPECIFY where you want your money to go http://t.co/i0w1T3uE .  This link to Rock Research Labs lets you decide!

Every major hospital has research areas. If research is what calls you, I know of a number of places that do research.  Here’s a blog post I wrote about donating …. http://t.co/dM1O4iwD  Cold Spring Harbor Lab may have a similar program. They do high risk high reward research, too.”

A participant suggested that “if you’re donating for research, get name of people doing research. Call and ask where to donate.”

 

Another participant wondered, “Realistically, unless you have it, a family member has it, or a close friend, do people really care? Will awareness change that?”

 

Yet nother participant wondered if doing something for others always means money.

 

According to Katrina, “No. … encouragement and support don’t have to always include money – I don’t think – on a personal level. Find ways to help patients/families directly, more personal involvement”

AnneMarie volunteers in the hospital visiting surgical patients.   Don’t ask “what can I do” Just Do it! Drive people to treatment. Make casseroles  for families.

One of the participants stated that there needed to be an Awareness Month on health disparities.

“ I’ll scream for awareness about them til people are sick of hearing and do something .“If goal is to make life better for sufferers, find out who delivers direct services to pts/families .  I’d rather give money to a social work department fund for transportation, medications, etc.  Find out what keeps people from getting what they need. It’s usually something we dismiss or don’t realize  The smaller and more personal, the better. transportation, resources, ability to leave an ill family member long enough to get out of house.”

The final thought reiterated by all was an admonishment to all of us:

 

“Don’t underestimate your capacity to make a difference. ”

 

Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go…” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  Her decision to work as a health communication researcher evolved from this experience as well, “I didn’t want other kids, I didn’t want any patients … I didn’t want any other families to feel that way either.”

Dr. Ivor Horn’s journey from Jackson to Washington, DC and to an Associate Professorship in Pediatrics at Children’s National Medical Center and George Washington University School speaker-ivor-horn-lgof Medicine included hardship and courage.  Only in medical school did she discover that her family had been homeless at one time, “the fact that no one told me I was poor or homeless …gave me the freedom to not put boundaries on what I could do,” she writes.

This is why Dr. Horn maintains a clinic in one of the poorest areas of Washington, DC:  Ward 8.  Some facts highlight the need in this area of DC: the obesity rate in Ward 8 is 42%, even higher than Jackson Mississippi and the average family income is $10,000 per year.   “The families I see experience challenging home lives a lot like that which I experienced growing up; I can look a kid in the eye and say with conviction that I know exactly what he is going through….” At her community health center, no one is turned away because they can’t pay.

As a physician, Dr. Horn is tested by her clinic’s schedule, “Our schedule allows 10-15 minutes per patient with a little extra time for complex patients…. those with multiple medical conditions that need multiple services.”  So she empowers her patients with her four rules:  “1) Sit down. 2) Listen, 3) Let them know we are in this together.”  And her final, the “doorknob rule- “You can stop me anytime during the visit, even if my hand is on the doorknob.”

Pediatricians need strong partnerships with parents.  What she has learned in her practice and her health communication research is that, “patients are more likely to follow a health plan they helped develop than one dictated to them.”  Her experience tells her that, “Managing a chronic condition like asthma is about what you do every day, not just during a crisis. Give patients and caregivers tools that make management part of their routine. That means asking about THEIR routine,” she says.

Now she is sharing this knowledge with health care innovation designers in what she calls ‘Inclusion by design.’  She defines ‘inclusion by design’ as “A conscious effort to include the minorities who need disruption of health care, IN the innovation, development, and design process.”

To Dr. Horn, it’s really a no-brainer. As she points out,   “Minority communities are actually early adopters of technology. They own more cell phones and are greater users of social media.”

Yet she is frustrated that, even though there is a wide variety of health IT out there, much of it is not reaching minorities or the underserved.  In a presentation at the Healthcare Experience Design, 2013 conference, Dr. Horn gave a step-by-step description of just how to reach more of the underserved with innovations.  For example, she pointed out that personal connections are key and active listening is necessary.  Developers need to communicate and collaborate with minority communities on innovation solutions.  “Trust and listening matter in health…and they matter in the design process,” she says. “Companies need to look to minority developers and Health Care Providers who are in the community already,” Dr. Horn states.

Dr. Horn recommends that designers start small or locally and then scale up.  When HIT designers bring up the barrier of cost or money, she makes the important point that bringing innovations that help those who need it most will, in the long run, reduce health care costs for everyone.

Dr. Horn practices what she preaches,  “When my patients see me in their neighborhood, it matters,” she says.  When she recommends apps for teenage patients with asthma “Their eyes light up and they feel empowered.  I’m on their turf.”

Knowing where her patients are coming from makes a huge difference. “I know what it’s like to have your phone or your electricity turned off.” And being a role model is important. “I know how important it is for my patients to see someone who looks like them and who tells them, I’ve been where you are and there is no excuse for you to not reach for the best.”

And that’s just what Ivor Horn has done since that fateful day in Jackson, Mississippi.

Content from:

#HCHLITSS Tweet chat transcript

Presentation at HealthCare Experience Design 201 Conference 

Dr. Ivor Is In:  MyBrownBaby Blog

 

 

 

No One is Alone in Anything

Hearing a diagnosis of “cancer” from your physician can be terrifying and isolating. Yet, Nancy Stordahl knows “no one is alone in anything.” And she’s been making sure of it by being there for others diagnosed with breast cancer.

That’s because she’s been through it, twice: once as a caregiver and then as a patient herself. “My mother was diagnosed in 2004, metastasized in 2007 and died in 2008. I was diagnosed in spring of 2010,” she says. The almost mechanical recitation of dates belies the emotional upheaval of the past nine years.

But Ms. Stordahl hasn’t kept quiet. She is part of the large and connected community of breast cancer bloggers that are sharing their stories on the blogosphere. She’s also the author of the book Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy.

“I couldn’t find information I wanted to read about preparing. There isn’t much out there about getting your mind in the right place. Lots on side effects and such, but not the mind,” she discovered. “My ‘research’ was my personal experience. My book isn’t sciency, but personal…”

Ms. Stordahl wrote the book because of her own fears. “I wrote [the book] because I was terrified and overwhelmed before chemotherapy. First and foremost I wanted to help people get past the fear,” she says, “I wanted my book to be like talking with a friend who’s been there. It’s like a face-to-face chat.”

Ms. Stordahl knows a truism most don’t realize about chemotherapy: “Chemotherapy…makes illness very public to all.” With the loss of hair, comes a loss of privacy. It is there for all to see. “Chemotherapy…represents loss of control
Chemo is really tough to face. Admitting fear is hard to do, believe it or not,” she states. She recommends her book to family, caregivers and even health care providers.

DSCN96001To get a taste of Ms. Stordahl’s writing style, take a look at her blog Nancy’s Point. Unafraid to address real issues, it explores the experience of loss as well. “My book is much like my blog…personal and honest all the way…it’s how to connect best, I find.”

Although she states that she is not “sciency” Ms. Stordahl relates health information in a way that is approachable, especially when it comes to the genetic testing she and her mother went through. “I did genetic testing because my mother was BRCA2+ … found out 2 years after her diagnosis, sad to say,” she states. Being BRCA2+ means that she and her mother carried a genetic mutation that increased the risk for cancer. Ms. Stordahl calls her family history “complex” because, like so many families, the reasons ancestors died was not apparent. But she states, “I have a daughter and yes I would [recommend that she get tested], but it’s a very, very personal choice.”

Writing has been therapeutic for Ms. Stordahl, “It was a way for me not to implode!” she says. This new book author is looking ahead to her next book, one on her journey with genetic testing and BRCA+2 diagnosis. And she’ll keep going on her blog “Nancy’s Point” because it’s a “venue for advocacy” and an opportunity for special friendships. As she relates, “I count my blessings every day for my readers. I value every one of them. I really do.”

She sums up her message to others going through a cancer diagnosis this way, “There is no right way to do cancer. Your experience belongs to you.” And she adds reassuringly, “Don’t be afraid to admit your true feelings, fears, all of it. No one is alone in anything.”

It’s Okay To Laugh, Cry and Feel Uncertain

6360_1109050649382_1320300607_282944_6468605_s1In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”

For 16 years, Cindy was in remission.  During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.”  Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.

“I very unexpectedly became an at-home caregiver,” Rob says.  Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts.  Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best.  We are grateful for every day we have and look at it positively.”  Unable to use a prosthesis, Cindy is now wheel-chair enabled.

Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”

Published in July 2012, Rob’s book, We’re In This Together:  A Caregiver’s Story  is a 5 star hit on Amazon.  It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch.  Why’s this book so special?

It is written from the heart.  “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”

The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations.  As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice.  I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”

Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”

From the mundane to the profound, Rob shares and provides guidance to legions of caregivers.  And there truly are legions-the numbers are astounding.  There are over 65 million American caregivers, a number that is 29% of the total population.  These caregivers devote 20 hours a week caregiving.  Almost a million and a half of those caregivers are children, between the age of 8 and 18.   Forty percent of caregivers have been diagnosed as clinically depressed.

Rob does the job of many caregivers.  “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high.  I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”

That’s an important part of caring for himself as well.  “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.

This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times.  We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”

Staying upbeat has been his goal.  “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen.    Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure.   We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”

Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.”  In fact they have made it their job to know their health care providers.  “The nurses, not the doctors, run the hospital.  They are in charge.  We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families.  When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them.  Most are our friends today.”

They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “  Yet their idea of being positive and connected to others comes from having touched by death.  “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time.  Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.

When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is MV_3_12_RobHarris__197_WEBthe key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”

Rob’s first book is a love story but it is also about cancer.  “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”

Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.”  Rob says, “As men, we don’t share our emotions. I held them back, as well.  I learned as I went along that it was okay.”  And he promises that like the first book, “you’ll be laughing and crying.”

Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together:  A Caregiver’s Story and on Rob’s website.  This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.

Trying to Change the World for the Better: Meet Medivizor

“Medivizor’s vision is to improve the lives of people with serious medical conditions and those who care for them and to effectively medivizorapply software and the social web in the field of health for the betterment of humanity. This might sound like a lofty goal, and indeed, it is. We want to change the world for the better!”

As one satisfied patient, AnneMarie Ciccarella has pronounced, “Step Aside Dr. Google:  Enter Medivizor.” As the CEO of Medivizor, Tal Givoly describes, “Today, when people become sick, they often use the web to find information.  They find too much information.   Much of it, irrelevant. Much of it, not easy to understand and interpret.   Most frustrating [for them is]  finding something that seems hopeful, and wasting precious time with [their] doctor [only] to be disappointed.”

Within this dilemma, is Medivizor’s purpose. Medivizor provides medical and health information, vetted by physicians, to subscribers.  That information is personalized to their specific diagnosis  and delivered to them on an ongoing basis. Medivizor takes the futility out of the web search.

And the best part about it:  It’s a free service.

“It’s a subscription service. You sign up once, begin getting information from then on. That’s another key attribute,” relates COO Ronen Keinan. Ronen  Right now, the service supports breast cancer, prostate cancer, colorectal cancer, melanoma, and diabetes and is adding more diagnoses as they grow.  Even if the service doesn’t support your diagnosis now, “You can sign up now and put in your primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly states.

The first question you might ask is, “How are they doing this?”

Tal“We have a medical staff that’s overseen by our Chief Medical Officer.  Some review is automated and some human–physicians and PhD’s–that do peer-reviews, ” Mr. Givoly states.  Medivizor relies on content from PubMed.  “We strive to provide ONLY relevant information in words most can understand and act upon….The information is intended to provide value to the patient and or caregiver (and medical team). We develop a medical profile for the individual.  Then we semantically match new information according to that meta-data,” Mr. Givoly explains.

The health information provided is explanations of cutting-edge medical and scientific research, notifications of matching clinical trials,  lifestyle tips, community resources, and relevant treatment options. “Decisions of whether to include content is a medical team decision that gauges level of evidence and user interest ,” Mr. Keinan says. 

As Ms Ciccarella states, “A big part for me?  It’s interactive.  I let them know if information is helpful or not and why.”  And Medivizor respondsaacr to feedback.   

Medivizor’s formative team includes Tal Givoly, Chief Executive Officer.  Mr. Givoly was Chief Scientist of Amdocs (DOX), where he headed up innovation activities across the $3B company. Before that he held leadership positions in product management, software and product development. Ronen Keinan is their Chief Operating Officer. Keinan has 20 year of experience in high-tech and was most recently the Vice President of Portfolio Management at Nokia Siemens Networks (NSN).  Oren Fuerst, Ph.D., Chairman of the Board,  is a seasoned entrepreneur, investor, and author. Dr. Fuerst built, and continues to lead a number of companies focusing on medical devices and health informatics.  Prof. Steven Kaplan (MD) is the Chief Medical Officer. He is Chief of the Institute of Bladder and Prostate Health at Weill Cornell Medical College and also serves as Director of the Iris Cantor Men’s Health Center at New York Presbyterian Hospital.

The motivation for starting Medivizor comes from life experiences of its founders. “Each of the founders had a personal perspective and they knew each other over time and came together. For example, Oren Fuerst was a caregiver for his mother’s cancer and experienced the information problem first hand. Even though he was very knowledgeable and well-connected, it was just overwhelming and impossible to keep track.”  Mr. Givoly relates.  “Prof. Kaplan, a world-renowned doctor and researcher, has people coming in every day with irrelevant Google printouts.   And I saw good friends cope with their young child’s leukemia and what they had to go through in terms of medical research.   We got together and built the product/service/team to solve the big problem:  That medical information isn’t personalized.  That despite the enormous amount of information, finding ‘the right stuff’ is simply ineffective and inefficient.”

At this point, the start-up is a labor of love.  They are searching for ways to keep the service going but they are certain of one thing, “Medivizor is not intended for marketing,” Mr. Givoly states.  “There’s a lot of great information on web and  a lot of marketing.  Medivizor is not intended for marketing.” The founders are using three models to obtain some return on investment, first, “premium services to be introduced in future, second, licensing of software to medical professionals and third, referrals (clinical trials, treatment, etc.). But, business is not determining the information that is provided,” Mr. Givoly reiterates.

“What we provide is unique in many ways. First, is that it is truly personal: The user doesn’t “search” for information; they get information just relevant for them. We know enough about the person to do so. We sift through all the information and find what’s relevant, couple this with our medical team insights and the social web (crowdsourcing). We are HIPAA compliant and safeguard user data!” Mr. Keinan states.

“When I went to sign up,” says Summer Plum, a patient subscriber. “It immediately recognized Ehlers-Danlos (a rare genetic disorder characterized by extremely loose joints, fragile or stretchy skin, a genetic disorder) which is novel and nice.”  Ms. Ciccarella notes, “I use it for me and for my mom with metastatic breast cancer. It’s useful and helpful.  I am thrilled with the site…. ”

Making the content of journal articles accessible to everyone is a challenge.  “We aim for 10th grade English. We may personalize based on literacy in future. We take it down from, literally, Flesch-Kincaid grade levels of 18-22 down to 10. That’s a gap.”   To deal with this difficulty, they have added a “help box.”  Ms. Ciccarella remarks,  “There is a “helpful” box to interact back.. .if enough people said, ‘HUH?’ they would rewrite and resend information.  I have returned questions in the “helpful” box …. and got back a clarification of the information.”

“We intend it to be suitable for both the e-Patient and the average person. The balance is delicate, I admit. ” Mr. Givoly states. “However, data we’ve seen suggests that it does include ~90% of US adults.”

The company has a long list of conditions they are working to add.  “We’d like anybody coping with a serious or chronic medical condition to add Medivizor to their tools.   We believe strongly in being smart/engaged patients. Medivizor can help save time/effort and focus medical information checking.   Medivizor provides you info and ongoing updates specifically for your situation, as new things become available. If you want to know when we support a condition of interest… You can sign up and put in that primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly adds.

I can only say one thing: It’s not the same as anything out there. Clean interface and ongoing information.” says Ms. Ciccarella.  Dr. Gia Sison, a physician recently turned breast cancer patient agrees, “Once people try it, you truly appreciate its usefulness!  Just signed up. Nice website and easy to understand both from a doctor/patient point of view.” 

Patients can use the information and resources they receive from Medivizor to collaborate with  their local primary care physicians.  However, Medivizor doesn’t provide medical advice, nor does it replace a person’s medical team – it supports it.  Users can simply share what they get in Medivizor directly  with the ‘share with doctor’ feature. 

Ms. Plum says, It does take an immense amount of personal knowledge to be able to sort through all the information available [on the web]. ”  Mr. Givoly agrees, ” That’s one of the challenges we try to address: Simply what you need to know….We try to package that and we try to help build on knowledge.  Provide general knowledge and then become more specific. So it’s gradual.

Dr. Sison agrees, “In this world of medical information overload on the net it’s vital to have a one-stop hub for all (healthcare professionals/patients).”  Ms. Ciccarella states, “The site is FOR patients. Helps us be better members of our medical teams. We can ask the right questions and make best use of doctor’s time.”

Patient Advocate, Claudia Nichols states, “I see Medivizor as a clinical resource for my practice!”

 “We strive to provide as much transparency as we can.  Our mission is truly to make the world a better place by applying software and the social web for the betterment of humanity. We take great care to protect our user’s data and privacy.    We do not share personal information with others without explicit consent of the users. Best scientific evidence is always the prime consideration when sharing information with users. If there are controversial matters – we coach to reflect that.  If anything is ever sponsored, we would, obviously, make it very plain to see that.  Bottom line – we are trying to do good and avoid tarnishing our reputation. “

In the end, patient endorsements speak to Medivizor’s value.  As Ms Ciccarella states, “I can’t say enough about the service! “

Based on the twitter chat #HCHLITSS Health Communication, Health Literacy and Social Sciences

Bringing Back the Story: Wellbound Storytellers and Health Empowerment

Sugar-monsterbanner

The Navajo Sugar Monster

Long ago the Holy People predicted that a monster would take over the Navajos.

Our mothers and fathers would change…No longer were man and woman together.

One after another this monster ate away their faces.

It gnawed away Navajo identity….Everything turned from light to dark….Words ceased to exist.

The Holy People begin to cry.

The Navajo language meets its end…Mouths would soon close entirely.

X marked the spot….Over the eyes and mouths of the people.

The Navajo were not human anymore.

They were beings who craved only one thing

It was not water or food…Nor prayer or traditions…Nor love or family.

The Holy People were right.

Sugar is our monster.

A killer claiming Navajo lives…With a craving that could never be satisfied

Who are these monsters?

Mom? Dad?  Where are the elders? Where is my family?  Who will save us?

It’s going to claim the next generation if things don’t change…

We must stand and make a change…Stand up and fight against this monster

For you…For your family,

Your mother, Your father, Your children

For your Nation.

by Chantelle Yazzie (A neo-traditional story published on Wellbound Storytellers.)

Stacy Braiuca is one of the Native Americans writing for Wellbound Storytellers.  “There are currently 11 ‘Wellbounders’ all over the country, all different Nations, ages, backgrounds.  We try to write about strengths and weaknesses in our journey.  Not only are we trying to be a group of leaders to start a movement of storytelling, but storytelling is a natural fit to health empowerment.”

Just a year old, The WellBound Storytellers “blog is specifically trying to use storytelling to empower people, ourselves and others, on our health journey.”  Indeed, storytelling is essential to the wellness of native people.  “We have always told stories to pass our values, lessons, and learning to the next generation,” Ms Braiuca relates.

Ms. Braiuca is a Clinical Social Worker and Public Health educator. She works full time as a Research Associate for thewpid-Photo-Mar-22-2012-941-PM Center for American Indian Community Health and Healthy Living Kansas at the University of Kansas Medical Center, working on research projects about cancer, obesity, and health literacy.  She is a member of the Citizen Potawatomi Nation (hence CPN).   According to the CPN website, “The CPN are Algonquian-speaking people who originally occupied the Great Lakes Region of the United States.  Originally the Potawatomi were part of the Three Fires Council made up of Potawatomi, Ojibwe and Odawa, collectively known as Anishnabek peoples.”

Staying connected to one’s heritage is important to health according to Ms. Braiuca.  “Citizen Potawatomi Nation has members globally. They have the first population representative legislative government of contemporary Indian Nations.  We live everywhere are all connected via …  CPN FaceBook pages and CPN website.”

“Native Peoples sharing their journey to wellness”is the tagline for the Wellbound Storytellers blog.  And the journey to wellness is definitely needed among Native People.

According to the Indian Health Service of the US HHS Fact sheets, native peoples have a lower life expectancy than all the races of the US.  The leading causes of deaths according to 2005-2007 data, are heart disease, cancer, unintentional injuries and diabetes.  Native Peoples have higher rates of death by alcoholism (552%), diabetes (182%) and unintentional injuries (138%) than other Americans.

Ms Braiuca points to history in explaining much of the health disparities that plague Native people.  “Native health is a concern in all health areas. Disparities are woven into [our] history [as a result of the] 500 years of Colonial policy debacle.”  The issue of trust in western medicine is key among native culture “for example smallpox blankets, commodity food, Indian Health Service, reservations, removal [and] because traditional healthcare [has been] taken away,” Ms. Braiuca recounts. In fact “diabetes, cancer, and loss of culture and [traditional] medicine and language are tightly woven,” she says.

Native American genetic make up was not designed for Western diet and cultural habits.  Diabetes is a major health problem among native people.  The reasons vary but include “lack of prevention, poor healthcare and commodities like flour and sugar and lard, used to make fry bread which is not a traditional food!”  Traditional foods are the “three sisters– corn, squash, beans– and wild rice, fish and wild game,” Ms Braiuca says.

Another risk factor for Native people is smoking.  “We have the highest rates of smoking of any population in the US, over 40%,” Ms. Braiuca states.  However she is clear that this problem is connected with the recreational use of commercial tobacco, not from traditional, sacred uses.

Because of the issues of mistrust, any prevention effort must be community based. It is “imperative to [have] buy in of the community… plus LONG relationship building,” she says.  Part of the problem is a lack of native specific research which is hindered by tribal sovereignty, health systems and issues of trust.  The Center for American Indian Community Health, where Ms. Braiuca works, is one of the few places in the country doing community based research with Native Americans.

The Wellbound Storytellers blog employs all kinds of technology “oral/audio, video, art,  and written” to get their message across.  Most of the stories are neo-traditional “as in tradition being born but also recalling traditional stories,” Ms. Braiuca clarifies.  This is because traditional healing stories are unique to particular nations and these stories can only be told by certain individuals, elders.  Lamsam-Teresa-1449-5x7-color-qty001

According to Teresa Lamsam, another Wellbound Storyteller, those specific  individuals have a responsibility for the story. “Most of the stories that would be relevant [to healing] are considered to have healing within the telling of them — which is what creates the responsibility for the person who carries the story.  The person who receives the story also has responsibility.  Usually, a ceremony must accompany the story.”

Bringing back the story to heal is the message of the Wellbound Storytellers.  “Storytelling is not just limited to the younger generation listening to the older one, it is perfectly appropriate to flip that script.”  And that is just what these storytellers are trying to do.

“There Is No Health Without Mental Health”

@DocGroucho“There is no health without mental health. I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.”

“Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD

Dr. April Foreman is not your average psychologist. She is an innovator and an extremely determined woman, especially when it comes to Veterans and social media. “I love serving Veterans in my role as Suicide Prevention Coordinator at my VA. Love innovating ways to give good care.”

That’s why she and her VA team went the extra mile to get her to a WiFi enabled Starbucks for a twitter chat. “I had to drive back from New Orleans and my government car wouldn’t start. My VA team knew about this chat and …helped me call the tow and get a new car in record time, so I could get to a place with WiFi! Many of the people I work with are Veterans…And they know how to work as a team!”

Foreman describes her job search which led to her employment this way, “At the VA, everyone I spoke with understood the value of connecting providers, patients and their health care system using personal technology and “’new media.’  In mental health care we understand it is the relationship that heals, and I knew that I needed to work in a place that understood the importance of life-long patient relationships. A place that would do anything, even brave the Web 2.0 frontier in health care, to do this.”

In the same post, Dr. Foreman states that she knew she wanted to be a psychologist since fourth grade. “Easing pain – even just a little bit – one person at a time has always been my personal mission,” she says.

Dr. Foreman uses social media to educate and inform. This is because social media is “where Veterans are,” she says. “Veterans operate by word of mouth. Social media is a natural extension of that.”

Dr. Foreman appeals to Veterans this way, “How do we build strong connections with you? Connections that might save your life or save the life of a Warrior you care about? There is me, there is you and woven around us there is this “system.” How do we build a bridge over it all and connect?”

She believes that technology is the answer. “We can use IT to reach out to people who feel suicidal. We no longer have to wait for them to call US.”

In fact, she points out that there are efforts occurring at this moment in social media. “Right now, Facebook users can tag concerning posts and get those posts reviewed by a national suicide prevention crisis center. We can also use smart phones to track mood, send data to Health Care Providers…maybe even predict changes in suicide risk.”

One of the difficulties Dr. Foreman faces in her efforts to use social media in psychology is provider attitudes.  The “biggest challenges [to using social media in psychology] are attitudinal. FEAR, very irrational, mostly by providers and system administrators.”

Concerns about privacy is also a common response from providers. But according to Dr. Foreman, “Well, the knee jerk reaction [is] that all tech is a “HIPAA” violation, or unethical…but they can never say why. Fear about confidentiality, and fear about crisis/suicide risk.  Fear about ‘boundaries’ and provider privacy. I also think many mental health providers tend towards being face-to-face and low tech. They feel uncomfortable with tech. Avoid it.”

Yet the benefits are great according to Dr. Foreman because she believes that psychologist could be “using technology to target risk-related content and bring crisis resources TO people in need.” Dr. Foreman also believes other providers need to become involved in social media and health 2.0. ““Primary Care Providers provide 80% of mental health care. Usually the last provider to see someone before suicide.”

“Humanistic providers have an obligation to use their social media presence in appropriate ways for patients.” There are reasons for Dr. Foreman’s vehemence. One moment of irrational sadness and a life is lost. It’s “very heartbreaking….Many people who die by suicide were not thinking rationally. A short, irrational, impulsive period.  It is preventable. It’s why I do what I do.”

For those providers who are concerned about using social media, Dr. Foreman suggests putting together a social media policy and sticking by it. Dr. Foreman created a social media policy which include personal rules for friending and contact requests from current and former clients. These policies help to respect privacy of both client and therapist. She has published them on her website.

There are other benefits.  “I also use socialmedia to network with a wider network of professionals. Bring knowlege to my patients. I’ve often helped patients use social media to connect to resources support during a therapy session.”

Another barrier to widespread use of social media technology in mental health is that  “More providers need education about [social media].  And to be paid when we use it as legitimate intervention….Health Care System administrators need education on the way I can scale care by having patients use technology to monitor and share symptoms.”

“I’d like communications technology to allow me to send a suicide risk assessment to someone in crisis and have that data go right into a medical record, to be seen and tracked by all providers. Primary Care Providers, too.  I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term,” Dr. Foreman proposes.

Clients that Dr. Foreman work with are Veterans of the Iraq and Afghanistan wars. “Many Iraq/Afghanistan Vets feel isolated from other peers their age.  They have done and seen things they can’t discuss very often, [it’s] hard to feel a part of civilian life.   Many Iraq/Afghanistan Vets served in the National Guard.   [They’re] not part of continuous military community. Not really civillian though.  Many of our newest Vets are having difficulty translating military experience into civillian jobs.  [It’s] very stressful.”

The Veterans Administration has put some important measures into place to serve these Vets.  “The VA has preventive and supportive measures in place for the newest combat veterans, especially their feelings of isolation. The VA has special case managers that track Vets from these wars, keep them connected with services.  VA and VetCenters also try to have support groups focused on our newest Vets.”

april-foremanWEBSocial media is valuable to Veterans. “I find that they like knowing they can get support after they leave our session. Portable support amazing….Many kinds of support are a Twitter hashtag, Face Book page, google search away….” she relates.

Suicidal ideas can be associated with homicidal ideas. “Many times, when I see someone in crisis, they have conflict in their relationships, and want to hurt both self, and others,” Dr. Foreman states. Yet she clarifies that having ideas does not mean someone is making a plan. “Ideation can be normal….We are mostly born with an aversion to killing ourselves and others. Have to erode this to harm self or others.” It is only through watching or experiencing violence that people “acquire capability” to harm themselves or others.

One of the tools that Dr. Foreman has used in her practice is an app which allows clients to record their feelings on a daily basis. One reason why self-tracking, using apps, is helpful is because “pain/mood make it hard to accurately think back and self-report. Daily tracking is much better.” When the client self-tracks, the information can be used by the provider for prevention.  “We can prevent suicide by lowering [the] lethal risk during [the] period of intense emotional pain when you can’t think straight… clear thinking [is] often derailed in crisis,” she states.

When someone starts talking about suicide, what should you do?  Dr. Foreman says, “ I take that talk seriously, and am VERY glad to talk about it. To know and to help.  Listen to the talk. Address immediate safety first. Get help and a consultation.”  She also provided the link to the Nation Suicide Prevention Lifeline .  She said, “Veterans who use our Veterans Crisis Line will get a follow-up call from a VA provider like me within 1 business day. ”

One of Dr. Foreman’s desires is something that anyone reading this blog can do.  Share the links to the National Suicide Prevention Life Line and the Veterans Crisis Line and keep the public discussion of suicide going.  “Reach out!” she advocates.

Based on #HCHLITSS The Health Communication, Health Literacy and Social Sciences twitterchat.

Reporters: Give ‘Em A Break

The people of Boston, like the marathoners, are resilient and resourceful. We cannot be broken by a cowardly act of terror. We will come back from this. Senator Elizabeth Warren

Patriot’s Day is a holiday in Massachusetts celebrating the anniversary of the April 19th Battle of Lexington and Concord during the American Revolution. It is celebrated on the 3rd Monday of April. My first experience of it was many years ago during my fellowship in Health Communication at Harvard.

This year I finally had the chance to see the running of the Boston Marathon. We went to see the elite wheelchair racers and the large pack of folks, many running for charities, at the corner of Washington and Commonwealth in Newton. This corner is right before one of the largest hills that runners face and lots of people cheered the racers to help them face the challenge.

We got home at 3 pm and found out via a phone call from family that the terrorist explosion had occurred at the finish line.

When you think about it, the person who planted those bombs wanted to hurt a lot of people –especially children and families. Children are out of school this week here in Massachusetts. Patriots Day is a work holiday and a time for families to be together. The terrorist/s wanted to hurt people who were cheering good people who were running for Tufts Medical Center and Fred’s Cancer Fund at Sloan Kettering and other charities. They wanted to hurt and maim the innocent.

And they did.

Sadly, the media has hounded the families of the three victims and seem to be hovering around those who are critically ill like vultures.

It is the continuing horror of this event. I request that the news media follow the ethics of the Golden Rule: “Do unto others as you would have them do unto you:…or your mother, father, daughter, son. Remember: “There but by the grace of God go I.”

Wow! What An Incredible Climate Change Infographic

This is an infographic created by Allison Lee. It comes from the website Learn Stuff.  Check out her huge list of sources at the bottom of the infographic.  WOW! Climate-Change

Physicians Need Social Media

When patients hear the term “The Empowered Doctor” they may ask “I thought physicians were empowered. Staff, systems ,procedures are controlled by them. What am I missing ?”**

31deeb1 “Doctors in their prime are going out of business,” says Dr. Simon Sikorski, President of Empowered Doctor Inc.   Dr. Sikorski believes that physicians need to realize they are are in business and that they need to monitor their patients’ satisfaction. “Patient satisfaction or “client satisfaction” is critical to success,” he believes.

Dr. Sikorski describes an empowered doctor as someone who is a “trusted filter of information.”  There are a number of places where patients are finding information, “Right now docs are competing for patient education with pharma, bloggers, health information companies, ratings sites etc.”   He advocates that doctors become active participants in social media and even prescribe apps.

Physician involvement in social media must be augmented.  Doctors need to spend time and money “investing in how they’re found. It’s no longer sufficient for doctors to have a website. So the doctors who don’t even have one, or a simple blog optimized for their name, are at a tremendous disadvantage,” he believes.

One of the main reasons for Dr. Sikorski worries about physician involvement in social media is because of questionable methods that are being used to collect and publish patient reviews.

“Patient reviews are a trap. To date patient ratings sites are largely in the business of blackmailing doctors, and not creating an actual service,” Sikorski argues.  In fact, he describes a practice of calling on physicians to  “purchase advertisements or remove bad reviews.”   The two sites that Dr. Sikorski believes are providing fair and accurate ratings are Google Plus and Facebook, one reason being that the reviewers are not anonymous.

Dr. Sikorski describes the patient’s process of finding a physician this way, “Take a patient who is looking for an orthopedic hand surgeon. He/she will look up on Google ‘orthopedic hand surgeon’ in their location, select several doctors, go to their websites … then go back on Google and try to find something negative about those doctors….unless 20-30% of patients actually write reviews about doctors (so at least ONE THOUSAND reviews per calendar year) everything on the ratings sites is misinformation.”

Dr. Sikorski asks patients who are using the Internet (e-patients) to be “patient” with their physicians.  Many e-patients complain that physicians will not address the information they have gleaned from the Internet. “Too many times I see patients come to a doctor’s office already frustrated with the message ‘It’s my way or the highway’ … to which the doctors respond ‘It’s my way.’” Sikorski is trying to change this response. “Some of my personal friends ask their patients to share the blogs they read, contribute content to their websites, and some of them even end up hiring bloggers on a part-time basis. Why? Because an Empowered Doctor is so rare to find, and when people talk about them on social media, that practice becomes celebrated on many different levels.”

Sikorski’s advice for physicians, get involved in social media.  Physicians “need to be on social media. They need to invest in patient satisfaction and their business. They need to develop a process where patients’ feedback and needs are just as important as medical knowledge. Doctors who do that can create very successful practices. Doctors who don’t… are retiring.“

Based on March 28, 2013 Health Communication, Health Literacy and Social Sciences Twitter chat #HCHLITSS.

**comment by Annette McKinnon @anetto

A new initiative on the Empowered Doctor is Em