What ever happened to old school medicine? It’s still around…

“Nothing connects doctor & patient faster than a simple moment of pure listening. Not just waiting for your turn to talk, but real listening.”

Tweet by Dr. Steven Eisenberg, January 5, 2013

I wrote a post a year ago entitled “What happened to Old School Medicine?”  Perhaps, by putting my mourning  for my father “out there” I have started something in my own life.  My most recent experiences with physicians, specifically with  my child’s pediatrician, has been like walking into the past.  I have found “old school medicine” in Wellesley, Massachusetts.  I don’t live in Wellesley but I took the advice of my child’s school nurse and made an appointment with her children’s pediatrician.

This is an ‘old school’ practice:  two physicians share it.  We have only seen these doctors twice but they both spent a large amount of time talking and listening to us.  When I have had a question, I called the office and later that day, the doctor called me back.  That hasn’t happened in a long time.


And then, there are tweets like the one above.  Faith is a beautiful thing!


I won’t give up…

My child is a wizard…and a dragon rider…and a super hero.  He can play all these games with such agility that it boggles my mind.  So today when s/he asked me to join in on one of the games that he enjoys, I was honored and humbled and…nervous.

Above is the first 15 minutes of someone else’s play…I crashed the dragon into the ocean, into the rocks, pretty much every place it could be crashed.  Leaning right, leaning left, I kept trying to get into the experience and succeeded–in becoming nauseous with each flip and dip.

I’m hoping that I will be able to get the hang of it…my child’s disappointment heard in deep sighs and “MOM, you have to get back to the village” said in that sing-song tone of the despondent.  Yes, hopeless…

Yet according to research highlighted in New York Times Magazine, video game playing and other types of games can improve attention and fluid memory.  Since fluid memory is supposed to peak during young adulthood, it behooves anyone whose been 29 and holding for a couple of years to get playing.

So I shall persevere, overcome and increase my brain power with Lumosity and Riders of Berk!  And beat the pants off of those other repeating 29 year old (repeating) moms out there…. I challenge you!

$375 Billion Worth of Value: Family Caregivers

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

Rosalyn Carter

First Lady Rosalyn Carter is both philosophical and truthful when she describes caregivers.  There are 66 million adults in the US who are unpaid caregivers–nearly 30% of the adult population!

The Canadian Institute for Health Information estimates that there are 2 million unpaid caregivers in Canada. 

Caregivers are defined as either formal or informal. Unpaid caregivers are the informal type, helping others who, due to

photodisability, chronic disease or cognitive impairment, can’t perform essential activities on their own.  Informal caregiving is  performed by family members, neighbors and/or friends, often at home.   Natrice Rese is one of those millions of caregivers.

She worked in long-term care and home care until 2009 when she started family caregiving for her granddaughter, Maia.  Maia has a rare genetic disorder called Emanuel Syndrome, is developmentally delayed, totally dependent and non-verbal.  A website created by her daughter, Stephanie St. Pierre, provides support and information to others facing this disorder.  As Ms. Rese states, “Family caregivers aren’t just there 8 or 12 hours a day.  They live the job, breathe it, think it, sleep little…they need lots of support…  Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”

PHA cknClaudia Nichols is the founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare.  As a soon-to-be Certified Senior Advisor, she is keenly interested in how caregivers can be supported.  This support is critical now when  “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills,” she says.

In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. This figure is twice the amount spent on homecare and nursing ($158 billion)..  In 2007 the economic value of family caregiving was estimated at $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approaching total expenditures in Medicare of $432 billion.  That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

The foundation of care in US and Canada is unpaid caregivers.  Yet these caregivers are at serious risk themselves.

Ms. Nichols notes,”Caregiving is stressful and demanding for both caregiver and recipient.  It is often consumes all free time

Informal/family caregivers are at risk for depression, other stress-related illnesses due to stress, fatigue and social isolation. Economic toll fails to account for emotional & financial impact of caregiving on caregivers themselves.”  Ms. Rese agrees, “Not only do family caregivers provide unpaid care, but they also are out of pocket for incidentals, supplies, medicines, on and on.” Ms. Nichols asserts, “The worst case scenario is that caregivers go bankrupt,have breakdowns, become estranged from other family members, become ill themselves.”

Family caregivers are often thrown into the unknown, Ms. Rese feels.  In Canada, 2007 statistics from the Health Council of Canada indicated that  40-50% of seniors with high needs have distressed caregivers.  These same statistics say 2.7 million family caregivers are over the age of 45, 60% of these are women and 57% are employed in addition to caregiving.  Of those, one third of the cared-for have high needs in mobility, physical and developmental delays and chronic conditions.  Twenty percent of those receiving care at home have dementia, requiring 75 percent more care.

Many caregivers are single parents themselves, usually women with children, and sandwiched between elderly family members.  Seven out of 10 caregivers are caring for someone over 50.

The complexity of caregiving has changed.  According to Ms. Nichols, “nearly half family caregivers performed medical/nursing tasks with for those with multiple imgreschronic physical anad cognitive conditions and 78% family caregivers provide medical/nursing tasks like managing medications including IV fluids and injection.  Caregivers found wound care very challenging, more than a third (38%) wanted more training.” The rationale for their  increased care was a desire to keep their family member out of nursing homes or long term care facilities.

The urgency of the situation for informal caregivers cannot be overstressed, Ms. Rese believes.  “There is a crisis already, no beds to place seniors in, family caregivers running out of steam, lack of funding.”

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers,” Rosalyn Carter stated.  Giving caregivers a voice and influencing a political climate that is focused on “cost-saving” is imperative.

The National Family Caregivers Association now renamed Caregiver Action Network is a place to start.  This organization was founded in 1993 by Suzanne Mintz and Cindy Fowler.  This group has truly brought about awareness of the caregiving experience, becoming the go-to organization for anyone interested in learning about family caregivers.  It was instrumental in establishing the National Family Caregivers Month in November and in 2000 the federal National Family Caregiver Support program was established.  Caregiver Action Network’s mission is to “promote resourcefulness and respect” for family caregivers.

As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America’s family caregivers so that all caregiving families can have a better quality of life.”

Random Notes After Tragedy

1)  I haven’t brought myself to write about the horrible event in Connecticut.  We’ve kept our young one ignorant of what happened.

2)  I received this from a friend and felt I should post it….It is a direct quote.

ASAN Statement on Media Reports Regarding Newtown, CT Shooting
>December 14, 2012

“In response to recent media reports that the perpetrator of today’s shooting in Newton, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:
“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newton, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.
“Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

>Media inquiries regarding this shooting may be directed to ASAN

3)  Are any of us unchanged by the loss of those innocents?  

4)  We need to limit the amount of ammunition that people possess.

5)  Automatic rifles should not be available to any civilian in the United States.

6)  More money should be going into our system of mental health.

7)  Health insurance should cover 100% of mental healthcare.  These are the systemic problems that need to be addressed.

Final thought:

8)  Media please…Leave the families alone….they need the chance to mourn.

Guardian Angels and Mental Health

Late January I’m reminded 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.

He stayed behind and waited.  Something, perhaps his 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  it 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.

The New Patient Advocate: Sean Ahrens and Crohnology

Crohns-Colitis-Awareness-Week-CrohnologyWe don’t really think about our gastro intestinal system until we’re hungry or we get a stomach bug.  With a stomach bug, the pain, diarrhea, lethargy, and other symptoms make life miserable.  Imagine having these symptoms as a constant in your life.  Those who have Crohn’s Disease and ulcerative colitis live with this everyday.

So what’s going on?  What causes Crohn’s and ulcerative colitis?  We know that it starts with our immune system.  The purpose of our immune system is to attack bacteria, viruses and other foreign microorganisms that invade our body.  Normally, the gastro-intestinal system contains harmless bacteria that our body uses to help digestion and those bacteria are usually safe.  Unfortunately in people with Crohn’s and ulcerative colitis, there’s a glitch.  The immune system starts to attack these digestive bacteria causing an inflammation of the intestines.  Now inflammation is a normal response of the immune system, except, in this instance, the inflammation goes on and on and starts to harm the intestines, causing ulcers, intestinal wall thickening and other symptoms.

How would a healthy active 12-year old child react to getting Crohn’s? “You’re an average, normal kid in school” and all of a sudden you start having problems with your digestive system.  That’s Sean Ahrens’ story. “It was after a course of antibiotics for an ear-infection, which I got a lot of,” Ahrens remembers.  “I’ve lived with Crohn‘s for 14 years now.”

But Ahrens hasn’t taken his diagnosis lying down.  At age 26, he is a patient activist and creator of “Crohnology” a web-based patient community with attitude, and a lot of innovation. “I’m building as a new way for patients to share health information online,” Sean relates.

Crohn’s and ulcerative colitis are part of a larger group of disorders called “autoimmune conditions.” With these conditions, the immune system goes out of kilter, attacking the body.  Rheumatoid arthritis, lupus, fibromyalgia and multiple schlerosis are just a few of these disorders.  “Once diagnosed, I…realized I had a condition to which doctors had no solution.  That was really scary.”  In fact, 40 million Americans have heard those words from their physicians, “Autoimmune conditions—CATEGORICALLY have no cure.,“ Ahrens states.

Ahrens’s reaction was to look for help outside traditional medicine.  “When your doctor doesn’t give you a solution to your problem, you don’t just say OK .  You don’t just “trust” that we (conventional medicine) know everything. You search wide and far for things that will work,” Ahrens says.  In his quest for answers, he turned to fellow sufferers.  “I started the support group because it was connecting people that I found so valuable.”

Ahrens was at University of California-Berkley by then, studying computer science, “I was always really into programming.”  At the same time his support group kept growing, “when the group got too big for every patient to remember each other’s health experience— I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says.  “Crohnology” is the name of his creation.

Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.

 So how should people go about finding solutions to what ails them?  Ahrens is realistic about what is available on the web, “I still think the web is a bit of a wild west when it comes to health information,” he admits, which is why he’s trying a new approach, “I’m trying to program a better way to share this information — I think it requires a new platform. “

That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-baseWe have an online health tracking interface that lets patients update their health over time.  That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or through SMS (text messaging). patients on Crohnology can also create a treatment “timeline”.  That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.”  In other words, patient can create their own abridged medical record online with current infographics.

Additionally, Ahrens is interested in people meeting people. “Patients can choose to go by just their first name and profile photo. But that’s the lowest you can go. I believe that real name and real photo thing is a requirement sean-ahrens-headfor real connection and engagement online.”  So anonymity is not an option with Crohnology, “We give patients tools to “meetup” in person, and establish REAL relationships with other patients. This is key,” he believes.

From the data that has already been collected, Ahrens has found that patients who crohnology have 99% of their patient experience behind them, which means a lot of “story” telling vs. tracking. The web is better for constructing data-dense history.”

“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.”  Ahrens believes that patient advocacy is changing.  “I think online communities are the new patient advocacy groups.  It’s like the newspaper versus online news.  The medium has changed, and so the advocacy needs to move here.  If you think about patient advocacy groups, they are still, in a way, this old model of top down information.  Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” Ahrens believes.

If you are worried about patient privacy, Ahrens isn’t. “Patients can identify themselves by just their first name and profile picture.  Patients own their data: they can download, port it to another service, or delete it completely at any time. As a result of this, I can literally tell you that crohnology, is the best corpus of patient knowledge that exists on the web. If you have Crohns or colitis, @crohnology is literally the best place you can go to learn about your options.”  For people who have heard there’s no way to cure a condition, having that amount of information would be wonderful!

Ahrens’ work is being supported by angel investors like Esther Dyson.  There is interest from others.  “But  what’s great about this is I’m not really interested in the money. Yeah I want to do well, but I’m trying to change medicine.   I think that single fact radically changes what we’re able to accomplish. “

Physicians haven’t been quick to embrace patient communities. “I think it’s kind of like asking a teacher to engage in a student discussion group .  They would help add insight, but the value is the exchange of peer experience,” Ahrens feels there is a place for physicians in patient communities, “but I’m not waiting around for them to join and get involved. I’m going right to patients to help them now.”

To learn about Sean Ahrens experience with Crohn’s Disease, a video by Larry Chu has been developed and posted here.  To learn more about “Crohnology” and to stay abreast of news and updates on the site, add yourself to this site.

For a transcript of the November 29, 2012 twitter chat with Sean Ahrens  go here.

Giving Back One Telemedicine Backpack at a Time

During a disaster, infrastructure, like electricity, water, roads and communication, may be damaged or destroyed.   Large crowds of people are in critical need. “Help can’t get to them and they can’t get to help,” Randy Roberson found. The social infrastructure is surely overwhelmed and chaotic without any command and control.  Medical care, which is desperately needed, may not be able to get to those in need.  Imagine yourself  in such a  bleak situation, overwhelmed,  with desperate or injured mothers, children, elderly, and you have nothing to offer them.

Over the past 15 years, Roberson has entered turmoil and tried to find solutions.  Using technology, Roberson has created two innovations that are making a difference.  The “Doc-in-a-Box” and the “Bring-Em-Back-Pack” uses telemedicine and solar or wind power to bring the expertise of physicians living outside the disaster zone to relief workers treating the injured.   Since 2004, telemedicine has been rendering medical aid to disaster victims in India, Thailand, Africa and the US.

Roberson was motivated by need.  There has been “a repeatedly documented need for a medical clinic that was clean, well equipped and brought in via land, sea or air,” he remembers.  Creating the clinic included assuring that it was securable and tough enough to withstand aftershocks and rough terrain.

Roberson didn’t start out doing relief work.   He was a broadcast journalist who had a life changing interview with Dr. Larry Ward, founder of Food for the Hungry, an international relief and development organization.  “The interview really rocked my understanding of many things and made me want to know more,” says Roberson.  Subsequently Roberson quit his job and began an eight year mentorship with Dr. Ward, learning how to perform needs assessments and how to move in chaotic environments.

Yet even with this mentorship, Roberson felt he needed more.  “The first hours and days after major events are when large crowds are in critical need…People would be crying out to me for help but I wasn’t a medical professional,” Roberson explains.  “But I did know satellite communications and have always been a tech nerd.”  By the 2004 tsumani that hit Indonesia, Roberson and Dr. Alan Michels had created a telemedicine clinic.  “He (Dr. Michels) would look over my shoulder from 8000 miles… He guided me with ‘Do this-try that-put pressure here’ sort of fashion.  I placed a digital stethoscope on a patient in anIndia relief camp in and on other side of world he could hear the beat.”

Roberson is clear that in the future deployments of the mobile medical clinic, they will be staffed with former special forces corpsman. “These corpsman also know what it is like to work in chaos when you run out of bandages and use t-shirts instead,” Roberson assures.  With that kind of experience they are ready for anything.

 The clinic idea has grown to include a “complete containerized field hospital with all medical, housing, food, water and sanitation needs,”says Roberson.  The backpack was created for versatility.  They provide first response before the clinics are delivered. With it, relief workers can preform needs assessments and  “mass triage and transport operations and even day -to -day operations of humanitarian relief,” Roberson explains.  Patient assessments and electronic medical records can be started in the field and the patient information gets to the field or ship hospital prior to the patient’s arrival there.

Using solar power and wind is truly forward thinking, “In almost every major disaster event power is out and communications are down.  In many instances it takes weeks to restore those (in some countries months). To sustain operations we focus on solar, wind and fuel cell technologies to remain functional when completely off power and telecommunications.  We can then quickly switch back to cellular and standard power when it’s reliable again,” Roberson explains.

When relief workers come into a disaster area, they are always forced to make critical decisions based on a lack of real time information.  The “Bring-Em-Back-Pack” provides information through its rapidly deployable live audio, video and other data streams.  Saving lives and reducing suffering are the two greatest initial needs of a disaster situation and they are the focus of

this mobile telemedicine project. With it,  the same tool is used to move the situation through the 4 stages of incident response: rescue, recovery relief and redevelopment.

One of the most important features of this technology is its ability to keep people engaged after the media stops reporting about a disaster. “We also use to reach back to the world through social media and board rooms of corporate sponsors and foundations.  [It] keeps people engaged after the media stops reporting (all too quick) and it provides amazing accountability and transparency which is greatly lacking in humanitarian relief worldwide,” Roberson believes.

Creating these aids has been an act of love for Roberson.  [I’ve] “mostly paid out of pocket, [and am] working on now attracting partners.  Some support [has come] from friends. It drains pockets quickly, Roberson states.  Roberson and his colleague have created a for-profit arm  of his organization to bring these technologies to market and thus fund the not-for-profit Disaster Logistics Relief  that has been established.  To learn more please contact Randy Roberson at rroberson@disasterlogistics.org .

Every Human Has Rights!

Over the past 8 years, Nicholas Marshall Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.  This post is a continuation of the conversation we started with Cooper in October,”Great Things Are Possible.”

As a consultant to UNICEF’s Middle East and North Africa Regional Office and as a child protection officer in Haiti, Cooper has seen, first hand, the importance of the central tenets of the human rights approach:  empowerment and accountability.

Presently Cooper is a humanitarian researcher at the FXB Center for Health and Human at Harvard University. He started our conversation with a basic definition of human rights, “Human rights are freedoms and entitlements afforded to people purely on the basis of being human,” he says.

According to Cooper, all countries have signed at least one human rights treaty.  After signing a treaty, the country has to pass a law that ratifies the treaty.  This is how human rights agreements become national obligations.

“Human rights have both rights-holders (every person) and duty-bearers (countries, as they are the ones that sign HR treaties)  Human rights approaches seek respect, protection, and promotion of human rights by empowering rights-holders and duty-bearers to claim and advocate for their rights (rights-holders) and respect, protect, and promote fulfill (duty-bearers).,”Cooper states.

Viewing heath from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  “Human rights approaches change the focus from “do this” to “you have a right to this, here’s how to claim it, and we’ll help you do it,” Cooper explains.   Participation is the difference.  It’s not a top-down approach but it involves letting countries (the duty bearers) know what they should be doing. Because of this, “Human rights approaches would, therefore, change both the message itself and to whom the message is directed : …and the desired outcome.” With regard to health communication, these are important changes to the message and the audience.

With regard to policy, the human rights approach concentrates on those who are the most vulnerable. Policies created using this approach would focus on “promoting awareness, meeting needs and enforcing compliance,” says Cooper.

Confusion seems to occur when discussing rights and health.  “There is no right to healthcare, but there is a right to health,” Cooper says.  The United States has ratified a declaration of human rights, (Article 25 Universal Declaration of Human Rights and Article 12 of the International Covenant on Economic, Social and Cultural Rights), which means that the US has made a commitment to create legislation which fulfills this right.  For example, access to affordable care of a high quality is part of the right to health.  “The government DOES have a duty to respect, protect, and PROMOTE health,” explains Cooper.

Under the rights framework we have both freedoms and responsibilities.  Suppose you are a smoker.  “While you are free to smoke, you are not free to give somebody cancer.  Giving someone cancer would mean that you were violating their right to health (maybe life).”  What if your child got lung cancer from second-hand smoke? “Under the rights framework, your child would be able to seek restitution from you for giving them cancer.”

Human rights provides a framework for advocacy.  In this case, smoking bans PROTECT the right to health of the child, while PROMOTING health generally.  Cooper adds, “hough human rights themselves are conceptually apolitical, their articulation isn’t. Nor are the policies and programs to meet them.”

Programs built from a human rights perspective might simply inform people of their rights. Others might provide legal service.  “A program must never violate rights itself. This is non-negotiable, as rights cannot be “traded off” against each other The guiding principle for non-governmental. organizations is capacity building, of both the rights-holder and duty-bearer,” Cooper affirms.

The ultimate goal of human rights is that everyone “has the ability …to live with their rights fulfilled and protected… As RIGHTS, they are not things that can be disputed. You have them because you are human.”

Good news on Metastases Research!

Just a short note “quote”…

The Answer to How Breast Cancer Invades Bone

Researchers recently solved the mystery of how breast cancer takes root in the bone. Now, the discovery has led to an experimental drug for breast cancer that has spread to the bone.

At Princeton University, Society grantee Yibin Kang, PhD, found breast cancer cells use a protein called Jagged1 to upset the normal balance of bone builders and bone demolishers. Jagged1 recruits cells that normally break down bone to dig deeper into it. This in turn releases molecules that further spur cancer growth.

“We knew the bone is a fertile soil for breast cancer to spread to. But we didn’t know why. We didn’t know how to make bone less fertile soil,” says Kang, Princeton’s Warner-Lambert/Parke-Davis professor of molecular biology. “Now that we know, the next step is to design drugs to break that vicious cycle.”

Breast cancer spreads, or metastasizes, to the bone in 70% to 80% of patients with advanced breast cancer. These malignant cells invade the spine, ribs, pelvis and other bones, causing pain, fractures and other complications. Current treatments offer symptom control but little else, Kang says. “The hope is that with more options, more combined agents, we can effectively control bone metastasis and hopefully treat it as a chronic condition,” he says.

Kang and his lab team are now working with drug maker Amgen to test an experimental monoclonal antibody (a man-made protein) that blocks Jagged1 in mice.

Kang hopes his quest in the lab one day results in lives saved in the clinic. “What we try to do in the lab is to figure out what the enemy is capable of and how cancer achieves its goal of spreading and killing patients,” Kang says. “You have to know your enemy to defeat it.”

(Please be advised this is a direct quote from American Cancer Society)

Are Patient Communities an Effective Way to Deliver Care?

Are Patient Communities an Effective Way to Deliver Care?

Dr. Andrew Watson
Dr. Jeffrey Benabio

That was the question debated at the 2012 Connected Health Symposium on October 25.  Two physicians, Dr. Andrew Watson, Surgeon and Medical Director for the Center for Connected Health and Dr. Jeffrey Benabio, Physician Director of Innovation with Kaiser Permanente faced off on this topic.  Alexandra Drane, Founder of Eliza Corporation, moderated the event.

Dr Watson presented the argument in favor of patient communities.  Noting the Institute of Medicine’s figures that $750 to $900 billion are wasted by traditional healthcare in the US, Watson feels that the face-to-face system of care needs to evolve.  With so many US patients already online, online communities are a vehicle to reach people over distance and time and the medical community has an obligation to help organize this, he said.

Dr. Benabio began with a quote from another physician “Patients running online communities are like animals running the zoo.”  Although he felt this comment both shocking and insulting, he felt that it expressed the depth of his worry.   He also voiced concern about who sponsors online communities, especially pharmaceutical companies.

After these preliminary comments each debater worked to refute the other’s points.  Dr. Watson asked Dr. Benabio for the research proving that  patient communities cause harm.  He also refuted Benabio’s assertion that all communities are sponsored.  Dr. Watson believes that patients are waiting for physicians to engage.

Dr. Benabio continued providing examples he found on the Internet  to disprove the appropriateness of patient sharing.  For example, he stated that on one site a patient stated that he had a flu vaccine, followed by a seizure.  The patient said he never gets a flu vaccine because of this experience.  Several people “liked” the comment.  Dr. Benabio believed this statement would stop people from getting the flu vaccine.

The debate continued along the same vein.

Perhaps there was a flaw in the question that was asked.  Are patient online communities really about providing care?  Or are they doing something else.  The debate  illustrates the division  among physicians and other healthcare providers concerning patient communities.  However, in the end, patients are moving forward, reaching out to each other to exchange information, support and experience.  Ignoring online communities, standing back and watching, claiming that time spent online is wasted: these are unproductive attitudes. Getting involved with online communities will not only inform patients, it will also inform healthcare providers.  Communications is key and online patient communities are not going away.

What do you think?

After taking the survey please share your thoughts in the comments.  Thank you.

Alone Together: Sherry Turkle

On “Wait, Wait Don’t Tell Me” Paula Poundstone describes her view of the neighborhood playground.

Wait, Wait, Don’t Tell Me Radio Show October 6, 2012


Right now, panel, time for you to answer some questions about this week’s news. Maz, according to a study by the Wall Street Journal, a rise in the number of minor injuries to children might be caused by what?

MAZ JOBRANI: It’s not computer related.

SAGAL: It is, actually.

JOBRANI: Oh, the parents are not paying attention.

SAGAL: Because they are?

JOBRANI: They’re driving while being on the phone. Texting while…

SAGAL: They’re texting while parenting.



SAGAL: This is a problem now.

PAULA POUNDSTONE: Does no one see it? Do you not see it right in front of your eyes? I don’t understand this stupid thing with the phones and the iPad and all that stuff. I don’t get it.


POUNDSTONE: It’s right in front of us and we don’t see it. You know what I mean? I mean, we live right near a park, and I watch people all day long, go by the park, doing this here, or talking on their phone. You know, while the kid is like hanging out of the carriage.


AMY DICKINSON: My mother, anyway, never paid any attention to me and she didn’t even have an excuse.


SAGAL: Yeah.

DICKINSON: It was like…

JOBRANI: Well if you get the kids an iPhone, you could text each other at least.

SAGAL: That’s true.


SAGAL: It’s like, “Mommy, I fell down a well.” Be right with you.


SAGAL: I mean parents who are too busy with their phones you’re not missing much. It’s like, “Yeah, I saw my baby’s third step. You know, it looked pretty much like the first.”


POUNDSTONE: And then the other thing is they have to take pictures of it and put it up. I don’t like that either. I’m sick of seeing the happy people’s children on the Facebook. I’m just sick of it.



SAGAL: It shouldn’t be surprising though, a lot of the parents who were texting while parenting were texting while conceiving as well, so…



Even though everyone is laughing, there is something important going on.  According to Sherry Turkle, Poundstone’s observations aren’t unusual.  Turkle, Professor of Social Studies of Science and Technology in MIT’s Program in Science, Technology, and Society and founder and director of the MIT Initiative on Technology and Self,  has been studying how technology changes minds and hearts for many years.

Dr. Turkle was one of the keynote speakers at the 2012 Connected Health Symposium October 25 and 26 in Boston.

Turkle started her presentation with a quote by Winston Churchill, “We make buildings and then our buildings make and shape us.”  She thinks it may be the same with mobile phones, mobile technologies and computers.

Based on 15 years of research and hundreds of interviews with children, teens and adults, Turkle has concluded that we need to take a closer look at ourselves, especially when teens tell her “we’d rather text than talk.” Her new book, Alone Together: Why We Expect More From Technology and Less From Each Other documents her quest to understand the relationship we have with new technologies, especially with mobile devices.

In her talk, Turkle pondered changes in relationships among parents, children, sweethearts and friends.  Perhaps, Turkle asks, we have too close a connection with our machines, perhaps behind our incessant “connecting” lies loneliness.

Basically, her thesis is that we are so busy with our connections that we are neglecting each other.  When people text at meals, at funerals, at religious functions, what is really happening? she wonders.

She is most concerned about those who should be developing conversation skills.  Her findings suggest that  people are fearful of the give and take of conversation and may be substituting “mere connection” for conversation.  As one 18 year old told her that, “I can get everything I need from g-chat.” Another teen states, “When you text, you have more time.  On the telephone, too much might show.”  Her fear is that with text messaging, the collaboration, creativity and concentration of face-to-face communication is lost.

Adolescents are sharing between 3,500 and 10,000 texts per month.  From her many interviews, she surmises that many teens use texting to confirm their feelings.  Turkle is concerned about what is being lost during all the face time with a phone.  As one teenager stated, “Someday soon I want to learn to have a conversation” while another described her efforts to learn to “try to have eye contact while texting.”

If we don’t’ teach our children how to be alone, they only know how to be lonely, Turkle believes.

Turkle’s voice, at a conference about mobile technology and connection, was illuminating and powerful.  Her words were about “health” the central message of the symposium.  The Center for Connected-Health‘s welcome to Turkle’s research was tremendous. Those who work in connected-health and telemedicine truly desire improvement in the well-being of all.  With that in mind, her work sheds light on the human condition, the need not only for connection but also for intimacy.  It sheds light on the need for balance.

What are your thoughts?  


Dr. Turkle’s presentation made me wonder if there is a way for health communicators and believers in all the good that connected-health can bring to help us achieve balance.   Perhaps we could tweet messages like this…

“Stop texting and start talking!”

“Set aside “no technology times” with your loved ones, you’ll love the connection!”

“Turn off the phone, (or the computer), and give your child a hug!”

In the comments section provide some feedback.  If you voted yes, can you think of other messages?  If you voted no, what are your views on Dr. Turkle’s observations?

Sobering and Scary

Monday October 29, 2012 Hurricane Sandy struck the Eastern Seaboard. As it moved inland it hit two winter weather systems creating what has been called a hybrid monster storm.  As of November 3rd over 113 deaths can be attributed to Sandy on the US mainland, mostly in New York.  Tropical storm force winds were seen over the 800 mile wind and rain path resulting in fatalities in states as far west as West Virginia, as far north as New Hampshire and as far south as North Carolina.  Many are raising the question of the relationship of this mega-storm to global warming.

Josh Glasser studies the impact of climate change on public health, human security and disaster recovery at Harvard’s School of Public Health.  When discussing the topic, he turns to The Intergovernmental Panel on Climate Change the leading international body, established by the United Nations Environment Programme (UNEP) and the World Meteorological Organization (WMO)  for assessment of what is happening in climate change.   The IPCC is a body that reviews and assesses the most recent scientific, technical and socio-economic information produced worldwide relevant to the understanding of climate change.

According to Glasser, “Hurricanes have always happened, but global warming will be like accelerant on a fire.”  He explains that there is “consensus that global warming will most affect the ‘hydro-cycle.’”  The hydrological cycle, or water cycle, is the continuous movement of water on, above and below the Earth’s surface. Water molecules move from one reservoir to another:  from ocean water to the atmosphere, by evaporation and cloud formation; to condensation and precipitation as rain or solidifying to ice.

The common instrument of change in the cycle is heat exchange.  And that is where global warming becomes involved.  As described by Dr. Mey Akashah, the capacity of the atmosphere to hold larger cloud structures for longer amounts of time plays a part in this change.  Glasser agrees that there will be “more intense and frequent heat waves, floods, droughts and severe storms.”

Another impact of global warming is rising sea level.  “Sea level rising is a total wild card.  It complicates planning and makes storm surge worse,” he says.  One cause of sea level rising is melting of the ice caps.  However there is another that we don’t usually think about.  Imagine a pot of water.  As it heats, the water expands and actually rises in the pot. Now imagine the volume of water in the ocean, as it heats, it expands and rises.

Many countries are feeling the effect of the ocean water’s expansion now.  Some feel that the high storm surge during Hurricane Sandy was caused by this phenomenon.  Glasser has seen first hand, as a Fulbright scholar in Vietnam and later Bengladesh, the impact of rising sea levels on people. His interests include the link of climate change with human security, the impact of humanitarian practices, the importance of disaster recovery, adaptation planning and risk reduction.  “Many human societies have developed over time to adapt and conform to the environmental conditions in which they find themselves.  You see it in land use, housing, infrastructure, health care, recreation, voluntary migration patterns and so on.”  That adaptation keeps them safe in sometimes very difficult situations.  But when there are more frequent, intense disasters, especially in places with limited resources, people are put at higher risk. Environmental migrations are estimated by year 2050 to range between 50 million and 1 billion people.

“People have always been mobile, but the numbers are rising fast. “There are now more environmental migrants than refugees in the world. What’s more sea level rising and extreme events are likely to displace tens of millions in coming the coming decades,” Glasser adds.

How does climate change impact vulnerable populations?  Glasser explains that climate change undermines health in many ways.  It “…tears at the fabric of society–food production, accessing healthcare, the mental toll of disaster.  These impact not only human security, the ability to obtain needed resources on an individual level, but populations as a whole are affected.”

As has been seen with both Hurricane Katrina and now Hurricane Sandy, when important infrastructures are damaged, the effect can be devastating.  Glasser notes, “If the hospital or clinic is flooded out, no one is getting treated for any condition…climate-sensitive or otherwise. Imagine being an expectant mom, giving birth at home just as the monsoon floods come through.”

Glasser continues, “People the world over have adapted communities to their current environmental conditions.  Homes, agriculture, urban structure, health care, recreation, etc., are all tied to the status quo.  The crops selected, building materials, diseases to prepare for, even holidays and cultural festivals–all of it is related to the natural environment.  Too rapid change is a problem for all but especially a problem when the government is weak, or resources are rare compounding the environmental problems.”

Some suggest that people just move from vulnerable areas. Often the most vulnerable “the very young and the very old, disabled, minorities” and the other poor are in harms way.  “Cheap land is also the most marginal…living there is not always a choice,” Glasser point out. 

Additionally, there is little research on the reasons for people moving.  Likewise, the area of human rights is underdeveloped. “On the individual level promoting choice, autonomy and flexibility and freedom are important. But on population level, it may be hazardous if too many people move, or if too many people stay,” Glasser states.  These conflicting perspectives in human rights were apparent during Hurricane Sandy.   Governor Christie of New Jersey “essentially said those who stayed in Atlantic City were forfeiting all sorts of rights to protection.  Justifiably from the perspective of risk to first responders–but for many, there may not have been a realistic choice to leave.  There is a right to move but also a right to stay put,” Glasser explains.

There are no easy answers to these issues.  Global warming is likely to impact human well-being in profound ways.  Glasser sums it up, “All of this makes climate change a very sobering and scary possibility, I think.”


Skinny Jeans and Menstrual Apps

Susannah Fox speaks about her mentor, visionary physician, Tom Ferguson, with fondness.  As early as 1975, Dr. Ferguson was writing and advocating empowerment for patients.  In 1987 he began providing online health resources.  As the Internet evolved, Dr. Ferguson was at the forefront of the evolution of the empowered, engaged, equipped and enabled medical consumer, the e-patient.

From Ferguson, Fox gained an appreciation of health as being just one part of life, one of the many pieces of the puzzle of life.  At the 2012 Connected Health Symposium,  even as people self-track and become engaged with their health, Fox wondered how much self knowledge is really shared with clinicians.

As Associate Director of the Pew Research Center’s Internet and American Life Project, Fox has been providing information about the social life of health information, peer-to-peer healthcare and the use of Internet by those with chronic disease for over 12 years.  Fox shared  her most recent survey findings at the symposium.

According to Fox, 60 percent of Americans are tracking weight, diet or exercise routine.   One in three adults track health indicators or symptoms and one in three caregivers track their loved ones’ health indicators.  But, how are they tracking?

Surrounded by many people who are connected, technology savvy self-trackers, Fox had the courage to admit that her own self-tracking strategy does not involve scales or batteries:  she uses the time honored “skinny jeans method.”  That is, one owns a pair of jeans that one used to be able to fit into.  Striving to get back into those “skinny jeans” is the life goal of many women, myself included.  We monitor our weight and fitness via those jeans.

Around 50 percent of those who were surveyed are tracking in their heads–they use the “skinny jeans” method.

One in three are still  using the pencil and paper method.  Only one in five use technologies like apps, websites or devices.

If the person has two or more chronic conditions, he may be tracking:  sixty percent of those with two or more chronic conditions track their health information with eight-five percent of them using a cellphone tracker.

Yet even though people are collecting data, they aren’t sharing it.  Two-thirds of data collectors do not share the data they collect.  Fox believes that this missing information may be useful to clinicians and recommends clinicians ask their patients about health tracking.

Another piece of information that Fox gleaned from her survey results is that people are not interested in apps that stand alone.  She thinks successful apps are those that are  integrated with online programs like Weight Watchers.  Weight Watchers has had 10 million downloads of their app which is integrated into the Weight Watcher’s popular support and knowledge system.

Fox’s take-away is that those who are creating apps, websites or devices need to make tracking as easy as it is when keeping up with it in the head.   She also impressed on her audience the need for innovators to create apps that are what the consumer wants to know.

So what do consumers want to know?  An interesting outlier may lead to a clue of what information men may be interested in collecting.  Her survey found that  popular apps that men are using are menstrual cycle tracking apps.   Hmm…wonder why?

Susannah Fox was one of the many amazing speakers at the 2012 Connected Health Symposium that occurred October 25 and 26. I will be highlighting the content of this symposium in the next few posts so stay tuned.

Bed Rest versus Family Survival

Language matters.  So when we talk about changing a discussion of “Women’s Health” to “Women and Health,” we aren’t being tedious.  We are being profound.*

“Women and Health” is a phrase that recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families.  It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals.

Unfortunately, many societies are neglecting the needs of women throughout their lives.  For example, every year hundreds of thousands of women die in pregnancy and childbirth.  The inequity of health care is evident by the fact that 99 percent of those deaths are in developing countries.

When women are healthier, children survive and are healthier and that means the continuance of communities.  High infant mortality is a direct function of women’s health prior to conception, during pregnancy and after pregnancy.  Even in developed countries, health disparities increase the problems in pregnancy and increase infant mortality.

Darline Turner-Lee is actively working to help high-risk mothers-to-be in the US.**  She is a physician assistant and certified exercise specialist.  Her expertise along with her personal pregnancy experience has led her to create the blog and company Mamas on Bedrest & Beyond.  “I work to educate women and raise awareness to the issues of Mother/Baby friendly childbearing….I educate women to ask questions, be aware of any new changes in their health….”

Her focus is on women who have been prescribed to bed rest.  For those who are unfamiliar with the bed rest prescription she explains, “The “reason” bed rest is prescribed is to prevent preterm delivery. High blood pressure, pre-eclampsia, cervical insufficiency, preterm labor and multiple gestation are some of the most common reasons, but there are many.”  The bed rest prescription is more common than one would think, “Each year about 750,000 to 1milion women are prescribed bed rest during pregnancy.”

In her work with mothers who have been prescribed bed rest, Turner-Lee sees first hand, the impact of disparities on women and their children.  “When working women are placed on bed rest, they risk losing their jobs, their income and family security,” she describes.  “The disparity occurs between lower income women and women of higher socio-economic status,” she notes. “Lower socio-economic status women often can’t leave their jobs, so don’t “comply” [with the bed rest prescription].  As a consequence, those women, often minority women, end up with poorer outcomes.”

But as Turner-Lee points out it is not an issue of medical compliance. “Women weigh their options-provide for their “living” family or save an unborn baby.  It’s a hell of a choice to have to make,” Turner-Lee realizes.

Although there is legislation that should protect women, the Family Medical Leave Act (FMLA) only guarantees 12 weeks of unpaid leave with job guarantee.  Turner-Lee explains, “A big problem is the lack of paid maternity/sick/family leave in the US.   In lower paying jobs, if you are out, you don’t get paid.  After that, a woman is on her own. Between losing their income, being placed on bed rest (often in hospital), financial problems quickly rise. If mama or baby has complications, the medical expenses often render families bankrupt. It’s a huge issue.”  A prescription of bed rest can, in fact, be “devastating” for lower socio-economic women and their families. For example, with a diagnosis of cervical insufficiency, women may have to go on bed rest with four and a half months left in their pregnancies. In this situation, “complying with a bed rest prescription is “the difference between having a home and being homeless and hungry.  Even women in so called “white collar” jobs, if they are unable to work, they are at risk of losing their jobs, their

Of course, increasing opportunities for good health is the best way to prevent at-risk pregnancies.  In the present environment, preventing the possibility of bed rest is “really good prenatal care, really early in the pregnancy,” says Turner-Lee.  She cites research by Jennie Joseph, CPM, who has gotten positive results in starting prenatal care at six weeks which is two to six weeks prior to when US obstetricians typically first see mothers-to-be.  “In the US, obstetricians typically don’t see mamas until between 8-12 weeks and often a problem may already be brewing,” says Turner-Lee.benefits.”

Turner-Lee points to statistics.  “The US has some of the highest infant mortality rates in the world; highest amongst indus

trialized nations and even amongst some “developing” countries.”  The Office of Minority Health, part of the US Department of Health and Human Services provides some other sobering facts about US infants:

    •  African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
    • African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
    • African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
    • The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
    • African American infants are 2 to 3 times more likely to die before their first birthday than any other group.
    • Stillbirth is more likely in African-American women than any other ethnicity.***

Preventable conditions like hypertension and diabetes, (conditions that are more prevalent in low income women) are risk factors for problems during pregnancy.  Likewise, infections that impact the fetus are also more common in African American women.

Health disparities based on income and ethnicity impact mothers-to-be, fetuses, mothers, babies, children and all adults.
Women in every society are the main caregivers of children, the elderly, the sick and the disabled. Perhaps focusing on the right to health, which according to the World Health Organization, compels governments to create conditions so that everyone can be as healthy as possible, is the best starting place.  Because assuring that women are as healthy as possible is not just about their individual health, it is about the future health of their children, the health of a nation. Ensuring this human right makes sense for society.  In the US, even bed rest, a way to possibly prevent infant mortality can actually financially destroy the mother, a possible surviving baby and the rest of the family.  Is it possible that there is another way?

* For more information on this exciting change read this discussion by Julio Frenk, Dean of the Harvard School of Public Health

** The quotes from this piece are based on a twitter chat #hchlitss moderated by Kathleen Hoffman and RV Rikard held on October 18, 2012 with D. Turner-Lee.

***Content directly from Mama’s on Bedrest gathered from the Office of Minority Health

World Mental Health Day

Today, October 10th, is also World Mental Health Day.

 “Mental illness affects all of us, but there are still many myths and misconceptions about these disorders,”

Rosalynn Carter, Founder

Carter Center’s Mental Health Program 

I am re-posting (with a few additions) a post I wrote in May.

How do we de-stigmatize mental illness?   Reframe the discussion.  Okay.

So….What is mental illness?

It is 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?  Understand this. The brain is an organ that can get sick just like the stomach or lungs.   Funding research from this perspective would be a huge step in the process of reducing the stigma of “mental illness.”

Join the cause.  Blog about mental health today , de-stigmatize mental illness AND donate to research on diseases of the brain.

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.

This post gives people a terrific list of USEFUL things to do during Breast Cancer Awareness Month.


by Holly Raby, guest blogger

Spoiler alert- I’m going to reveal one of the latest Facebook games going around!

In past years, women have been asked to update their Facebook status with their bra color, the location of their purse, and other odd statuses in the name of Breast Cancer Awareness.  One of this year’s versions is to post a heart as your status.

This is supposed to promote Breast Cancer awareness.  Can anyone tell me how, since one of the rules of the game is “if anyone asks you why you have a heart as your status, don’t tell them”?  What’s the point?  How does that spread awareness?  And besides, isn’t everyone already aware of Breast Cancer?

How about something more useful?  If you want to do something meaningful for October, do something that will actually help yourself or someone else.  Don’t settle for posting a heart and buying…

View original post 531 more words

E-Patient Advocacy for Rheumatoid Arthritis: Annette McKinnon

Annette McKinnon is happy with the care she gets as a Canadian citizen. “Our healthcare system covers everyone. We all pay through taxes but all are in the group.  Doctors visits, physicals, imaging, most lab tests are fully covered. I know that a serious or lengthy illness will not bankrupt me.”

Being a patient in Canada has been important since McKinnon has Rheumatoid Arthritis (RA).  RA is a chronic, degenerative, autoimmune disease.  The body’s immune system starts attacking itself, especially the membrane surrounding the joints.  It is very painful and destructive.  RA is also a systemic disease, meaning the whole body is involved.  There is no cure for it, but the earlier it is caught, the better an individual’s chances of going into remission.

McKinnon also advocates for patients with RA. “RA changed my life plan, family dynamics and career. “    She has had RA for 30 years.  When she first began to feel bad, she went to her physician but he didn’t believe her symptoms.  “My GP (general practitioner) thought I was hysterical.  I tried another doctor. That GP said take 12 aspirin a day and come back in 3 months.”  Because of the delay in her diagnosis, McKinnon has joint damage,  “if I meet you, you can see by my hands I have RA.”

This is one of the reasons McKinnon advocates for improved education and awareness, especially among providers, “Not much time is spent on the musculoskeletal system in medical school I hear so we need to bring awareness of symptoms to Primary Care Physicians.”

Since her diagnosis, treatment for RA today has improved.  Yet because of the disease’s complexity, medications used in treatment regimes are even more complex. Corticosteroids and immune suppressing medications, like methotrexate, are used.   Treatment requires sophisticated multispecialty care.  Unfortunately building a specialist care team is often left to each individual patient.

That’s why support and information sharing can be so valuable.  “I… learned to advocate starting with me.” McKinnon says. “I share information with others with RA and provide support through online groups.   [I  also do] mentoring and patient partner activity in real life.”

McKinnon is also on the Board of the Sjogren’s Society of Canada.  Sjogren is another autoimmune disease characterized by damage to the salivary glands resulting in difficulty swallowing, chewing and speaking as well as affecting the tear glands causing sun sensitivity and dry eye.  It also can affect other organs. Around 30% of those with RA have Sjogren.

Additionally, McKinnon’s advocacy “centers on early diagnosis and treatment and access to very expensive drugs.”  This is because medications are not covered by Canada’s universal system unless you are low income.  She has also advocated on a national level working to get certain drugs approved by Health Canada, “I help advocate on how the healthcare money is spent and what diseases are funded for research.”

So, though she wishes that she did not need to rely on her husband’s insurance coverage to pay for her medications, she is otherwise satisfied being in Canada single payer system.  “I hear that a health plan member in USA gets on average 33 letters a year. I get none. No paper work.“

And she feels that’s something to smile about.

This post is based on the twitter chat #hchlitss conducted on September 27, 2012.  The transcript is available.

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.


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,


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


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)

Won’t You Be My Neighbor?

It’s a beautiful day in the neighborhood…

Where you live can affect your health in ways you might not be aware of.  So says a new study by Melody Goodman and her associates.  Her research focuses on health literacy and how it is related to residential segregation.

What is residential segregation?  In this case it refers to the ethnic or racial makeup of communities. Recently Reuters  reported a new study that reviewed the moving habits of over 100,000 families in the last 30 years.  According to Kyle Crowder author of the study from the University of Washington in Seattle, sixty percent of families leaving black neighborhoods moved to black neighborhoods and nearly seventy-five percent of  whites moved from white neighborhoods to another white neighborhood.   In fact, the majority of blacks, whites and Hispanics, regardless of income, continue to live in neighborhoods with residents of their own race.

Why is this important?

There seems to be a relationship between segregated neighborhoods and a variety of health risks ranging from infectious diseases to exposure to toxins (Osypuk and Acevedo‐Garcia, 2008).   For example, according to the CDC, exposure to benzene, a well known carcinogen (cancer causing toxin) is more likely among children in poorer urban neighborhoods.  Benzene is in gasoline, and is found in the air on highly trafficked streets. Since there are fewer playgrounds and sidewalks in poorer neighborhoods, children playing in the streets have increased exposure.

Access to health care is another problem.  How do you decide which doctor or dentist  to use in your community?  You ask your family, coworkers, neighbors, trusted others and get a smattering of stories about their experiences.  Then you choose among the recommendations and try to get an appointment with that health care professional.

Since more African Americans and Hispanics have lower incomes on average than Whites, they are more likely to either have no health insurance or to be covered by Medicaid.  Additionally they are less able to pay out of pocket for services.   A domino effect results…since providers don’t receive full reimbursement for their services they are less likely to locate their practice in minority communities.  (Bronstein et al., 2004)

When physicians and nurses live and work in your community, there is more of a chance for informal connections with them.  This increases the amount of  health information available in the community just because there’s a nurse or doctor or dentist in the neighborhood answering questions, (Cornwell and Cornwell, 2008.)  In poorer communities without health professionals there is less available health information.  With less informal contact, trust may be impacted.  Among African Americans and Hispanics studies find that there is lower rates of trust of health care providers.

Additionally with fewer health care resources, African-Americans and Hispanics are more likely to turn to community health centers or hospital outpatient departments and emergency rooms (Gaskin et al., 2007, Lillie‐Blanton et al., 2001).

So we come full circle.  Goodman and her colleagues looked at health literacy, or the degree to which a person can obtain, process and understand health information and services to make decisions.  Lower use of preventive services, poorer management of diabetes and other chronic diseases and more hospitalizations are associated with lower health literacy. When Moody and her associates looked at a diverse sample of patients at a community health center, they found that, no matter their race, ethnicity, age, education or even country of birth,  those patients who said they had attended a mostly white junior high school or were living in a mostly white neighborhood were more likely to have adequate health literacy than those who did not report either of these factors:   where they lived and where they went to junior high school impacted their health literacy.

Would reimbursement changes affect the living and working decisions of health care providers?  Could health literacy, taught to all, from elementary through high school, make a difference?

Won’t you be my neighbor?

Something to think about, don’t you agree?


Melody S Goodman, Darrell J Gaskin, Xuemei Si, Jewel D Stafford, Christina Lachance and Kimberly A Kaphingst, Self-reported segregation experience throughout the life course and its association with adequate health literacy, Health & Place, http://dx.doi.org/10.1016/j.healthplace.2012.04.010

Other citations mentioned in Goodman, et.al.

BRONSTEIN, J. M., ADAMS, E. K. & FLORENCE, C. S. 2004. The Impact of S-CHIP Enrollment on Physician Participation in Medicaid in Alabama and Georgia. Health Services Research, 39, 301-318

CORNWELL, E. Y. & CORNWELL, B. 2008. Access to expertise as a form of social capital: An examination of race-and class-based disparities in network ties to experts. Sociological Perspectives, 853-876.

GASKIN, D., DINWIDDIE, GY, CHAN, K, AND MCCLEARY, RR 2012. Residential Segregation and the Use of Healthcare Services. Medical Care Research and Review, 69, 158-175

LILLIE-BLANTON, M., MARTINEZ, R. M. & SALGANICOFF, A. 2001. Site of medical care: do racial and ethnic differences persist? Yale J Health Policy Law Ethics, 1, 15-32

This is an incredibly well written commentary on the language of cancer. Yvonne brings us round to face our society’s efforts through the “language of detachment” to make those with cancer feel like “the other” A must read….

considering the lilies

“I read the news today, oh boy . . .” and prompted by Marie’s questions: who are cancer survivors and is it really necessary to celebrate survivorship on the first Sunday of June, I began yet another interminable trek through the unfiltered Internet. I found no answers for Marie. Just more questions. Admittedly, before today, I was completely unaware that such a “treasured worldwide celebration of life” was on the calendar and has been for twenty-five years. I wonder would I have been any the wiser had I not been diagnosed myself. So who is a survivor, and who do I think I am? At best, I am ambivalent. According to the National Cancer Survivors Day website:

a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate…

View original post 1,191 more words

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.”


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.


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


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.

Exquisite writing by another taking the health advocate’s challenge!

considering the lilies

Day Three of my Health Activist Writers Monthly Challenge, and I’m thrilled to be taking part in it with my blogging buddies Marie Ennis O’Connor and Jan Hasak, two compelling writers who are truly inspired and inspiring in all they do.

Day 3: If you had a superpower, what would it be and how would you use it?

I remember the first time I heard about communing with the dead.  I was about 9 years old, and some children at school were talking about how they had received messages from “the other side” via a ouija board. I was both fascinated and frightened by the prospect of them sitting around it in the dark, their fingertips on a glass, nervously waiting for ghosts to spell out the answers to their questions. Superstitious and gullible, I may well have believed that indeed it was the spirits moving the glass…

View original post 1,306 more words

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*.


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.