Does it have to be this way?

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

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

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

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

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

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

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

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

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Angels In Our Midst 2

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

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

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

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

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

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

 

 

Angels in Our Midst

“The joy of life after cancer”

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

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

“The joy of life after cancer”

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

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

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

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

“The joy of life after cancer”

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

“The joy of life after cancer”

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

“The joy of life after cancer”

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

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

“The joy of life after cancer”

Susan Niebur died February 6, 2012. @whymommy

 

Memorial Day Weekend 2003

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

Percent of adults who binge drink per state

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

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

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

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

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

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

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

Resilient?

Just a random thought…

Have you heard people say

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

I have and I just want to say to those people

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

Save A Life

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

Wanderings in Puerto Rico #EOL

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

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

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

¡ Ejecutar!

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

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

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

Me encanta la canción del Coquí.  ¿Lo oyes?

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

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

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

Ven conmigo.

*For a dear one…I love you!

The Power of Play, Part 2

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

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

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

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

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

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

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

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

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

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

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

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

Unlocking the Individual’s Ability to Care for Themselves*

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

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

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

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

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

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

Feedback seems to be a powerful motivator.

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

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

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

Another innovation developed by the Center involves improving medication adherence.

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

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


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

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


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

                “All of the above, but mostly patients,”


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

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


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

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

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

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

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

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


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

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


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

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

                The digital divide:

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

                “Low tech communities need most help”

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

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

Use of hands, eyes for text messaging

“The age ceiling to connected health”

“Risk of increased disparities”

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

Participants also proposed solutions and or disagreed with  these concerns:

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

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

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

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

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

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

Others suggested more ways to use connected-health:

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


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

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


Wonderful links were provided by participants:

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

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

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

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

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

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

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

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

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

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

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

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

Ipad apps for kids with autism @thinkingautism @shannonrosa

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

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

Motivated by Love

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

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

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

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

Dance Like No One’s Watching

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

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

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

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

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

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

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

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

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

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

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

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

Their three words have meaning;

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

Lauriek: “Love”, “hope”, “bravery”

BethlGainer: Peace, perseverence, courage

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

BRCAinfo: love community peace

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

MaverickNY: T1: mine are rebuild, refresh, renew

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

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

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

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

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

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

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

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

When asked about making resolutions…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jedipd: What a wonderful family of friends!

Chemobrainfog: just saw Jupiter wow!

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

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

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

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

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

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

And they have fun!***

Does your soul speak?

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

** My three words Dr Attai

***Shaping 2012 with 3 words

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

Communicating through photos: Health Advocacy meets Occupy Wall Street

Perhaps it was all started by Frank Warren’s Post Secret project in November 2004.  Whatever its beginnings, using stark note cards to tell a story in video or still photography has become an important and intense vehicle of storytelling on the Internet.

Teens have been using index cards in videos to describe their despair at bullying, their secrets and their understanding of faith.  One teenager, Ben Breedlove, just used this format in December 2011,  to describe three near-death experiences that gave him peace in facing death.  His family posted the video after his fatal heart attack on Christmas Day, 2011.

Occupy Wall Street has also been using this style, in still pictures,  to allow people to self-identify as part of the movement and to tell their stories.  Hundreds of people have added their stories.

One example of this compelling format is Stephanie Sauter’s Facebook post.   It is also an example of a message found in many other Occupy Wall Street narratives.

After conducting a random and cursory review of  200 October postings on  the Tumbler website,  160 of those postings chronicle the negative impact that health (and the health care system in the US) has on personal financial status.  These essays trend around similar themes.

Many of the 160 posts described major medical crises.  Health insurance was unavailable for  the following reasons:

1) Employers had discontinued providing health insurance, or employers didn’t provide it to begin with.

2) The individual who posted was self-employed and couldn’t  afford health insurance.

3) The individual had no health insurance due to unemployment.

4) The individual was working at “part-time” jobs which generally have no benefits.

5) Health insurance premiums kept rising and pay didn’t keep pace with the rise in premiums.

As in the case of Ms. Sautter, others experienced a worsening of their medical condition because of a delay in care, thus increasing the cost of their care in both money and health.

Care of eyes and teeth were of neglected out of necessity.

Denial of coverage due to pre-existing conditions and extremely high premiums due to rare or genetic conditions were noted.

Care for mental health, medications and therapy, were not covered by health insurance and required out of pocket expenditures.

Several veterans expressed the effect of war on their health and decried the lack of affordable mental health services.

Caring for elderly family members, to keep them out of nursing homes, has caused heavy financial burdens.

Even those with health insurance describe being overwhelmed by medical bills.  Many are using up life savings to pay for medical care or medications.

These postings create a clear and compelling picture of the enormous burden that is being placed on the citizens of the US.

Read the posts.  Then decide for yourself.  Why shouldn’t healthcare be a right for all Americans?

‘Twas the Night Before Christmas in the Lawyer’s Offices

A variety of foot apparel, e.g. stocking, socks, etc., had been affixed by and around the chimney in said House in the hope and/or belief that St. Nick a/k/a/ St. Nicholas a/k/a/ Santa Claus (hereinafter “Claus”) would arrive at sometime thereafter.

The minor residents, i.e. the children, of the aforementioned House, were located in their individual beds and were engaged in nocturnal hallucinations, i.e. dreams, wherein vision of confectionery treats, including, but not limited to, candies, nuts and/or sugar plums, did dance, cavort and otherwise appear in said dreams.

Whereupon the party of the first part (sometimes hereinafter referred to as “I”), being the joint-owner in fee simple of the House with the parts of the second part (hereinafter “Mamma”), and said Mamma had retired for a sustained period of sleep. (At such time, the parties were clad in various forms of headgear, e.g. kerchief and cap.)

Suddenly, and without prior notice or warning, there did occur upon the unimproved real property adjacent and appurtent to said House, i.e. the lawn, a certain disruption of unknown nature, cause and/or circumstance. The party of the first part did immediately rush to a window in the House to investigate the cause of such disturbance.

At that time, the party of the first part did observe, with some degree of wonder and/or disbelief, a miniature sleigh (hereinafter the “Vehicle”) being pulled and/or drawn very rapidly through the air by approximately eight (8) reindeer. The driver of the Vehicle appeared to be and in fact was, the previously referenced Claus.

Said Claus was providing specific direction, instruction and guidance to the approximately eight (8) reindeer and specifically identified the animal co-conspirators by name: Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donder and Blitzen (hereinafter the “Deer”). (Upon information and belief, it is further asserted that an additional co-conspirator named Rudolph may have been involved.)

The party of the first part witnessed Claus, the Vehicle and the Deer intentionally and willfully trespass upon the roofs of several residences located adjacent to and in the vicinity of the House, and noted that the Vehicle was heavily laden with packages, toys and other items of unknown origin or nature. Suddenly, without prior invitation or permission, either express or implied, the Vehicle arrived at the House, and Claus entered said House via the chimney.

Said Claus was clad in a red fur suit, which was partially covered with residue from the chimney, and he carried a large sack containing a portion of the aforementioned packages, toys, and other unknown items. He was smoking what appeared to be tobacco in a small pipe in blatant violation of local ordinances and health regulations.

Claus did not speak, but immediately began to fill the stocking of the minor children, which hung adjacent to the chimney, with toys and other small gifts. (Said items did not, however, constitute “gifts” to said minor pursuant to the applicable provisions of the U.S. Tax Code.) Upon completion of such task, Claus touched the side of his nose and flew, rose and/or ascended up the chimney of the House to the roof where the Vehicle and Deer waited and/or served as “lookouts.” Claus immediately departed for an unknown destination.

However, prior to the departure of the Vehicle, Deer and Claus from said House, the party of the first part did hear Claus state and/or exclaim: “Merry Christmas to all and to all a good night!” Or words to that effect.

— Author Unknown

Hunger and Health Literacy

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

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

                           … slow growth…

                           …increase illnesses, like colds and

                               infections…

                           …lower concentration and

                               alertness in school…

                            …inhibit brain development?

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

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

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

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

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

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

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

Patient-Centered Medicine Part 2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patients should not be patient with this.

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

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

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

 

Patient-Centered Medicine Part 2

WE ARE ALL PATIENTS!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patients should not be patient with this.

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

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

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

 

Women, Care-giving and Health Literacy

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

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

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

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

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

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

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

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

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

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

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

A National Emergency: Horrible Death for Older Man With Autism

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

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

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

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

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

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

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

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

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

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

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

The Power of Play

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

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

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

What happened to "old school" medicine?

Times they are a-changing.  My dad wouldn’t have liked what’s happening. C. A. Hoffman, Jr.  was an old-school physician.  Often, to the chagrin of his office staff, he spent real time with his patients.  Five o’clock would come and go. His office was busy and filled with his laughter and booming voice.  A ringing office phone made him happy.  There was a blackboard in his office.  It had to be white with chalk, covered with his “To Do” list.

When I visited the office, I would sit on a strange-looking metal safe and watch him as he went from room to room.   That safe was so heavy that no one could move it.  It just sat for years in the middle of the busy office front, taking up space and getting in the way. Dad had an answering service to take calls after hours.  The service would call our house in the middle of the night and on holidays. No matter when, he would return his patient’s calls and order prescriptions for them.  If it was an emergency he would direct them to the Emergency Room of the hospital.  Then he would get up and meet them there.
He worried about his patients.  If he lost a patient, I would know about it because he would be incredibly sad.When he died, there was a line of people that wound around the funeral home, waiting to speak to my family.  I don’t know how many hands I shook that night or how many times I heard, “your father saved my child” or “if it hadn’t been for your father, I wouldn’t be here today.” After he died, my family opened up that safe.  There were thousands of invoices that he had just slipped into the safe and forgotten.  Many, many of his patients received his care for free. My father is not the only physician I have known to do this.  My pediatrician was another.  He did not die a rich man, but he was dearly loved. Now when I go to the doctor’s office, I’m expected to pay at least the copay, before receiving care.  If I couldn’t pay, would I get to speak to the MD?  No; I would have to explain my financial situation to someone at the front desk in front of the other patients.  Probably, I wouldn’t get to see the physician. When I call the doctor’s office after hours, an answering service takes the call.  My call is directed to a nurse on call who is looking at my records on line.  S/he doesn’t know me.  If it is an emergency, I’m sent to the Urgent Care Center.  I don’t see my physician.My father opposed universal health insurance, calling it “socialized medicine.”  But I wonder what he would say if he saw medicine as it is practiced today.Many say the change in medicine is due to the terrible financial burden most medical students incur to become physicians.  I’m afraid I don’t see it that way.  I believe that medicine has become a business and generosity has no substantial place in the business paradigm. Nowadays, I believe we need universal health coverage because there are so few “old school” physicians left.  They are a dying breed.

Taming the beast? Patient centered healthcare

In the US, do you know what is spent per person on healthcare?   In 2008 dollars, it was $7,538 per person (or per capita).  The country with the next highest spending is Norway with $5003  per capita.  US spending is 20% greater than any other country in the world and two times what is spent in European countries.The United States has one of the highest rates in health care spending growth.These are startling statistics.   So what are people in the US getting for their healthcare dollar? On “health indicators” like infant survival and life expectancy, the US ranks below other countries.  Why is this?  Well, for one thing, not everyone is insured in the US.  This means that many people put off screenings and other preventive care until it is too late…that will ratchet down life expectancy and ratchet up cost.   If moms- to- be don’t get prenatal care, their babies are more likely to be sickly and to die.  Again, an increase in infant mortality or increase in babies in neonatal intensive care…very expensive.  But are these the only reasons for the mismatch between spending and performance?  The National Institutes of Medicine (NIM) been grappling with this problem for a number of years and have clarified the dilemma.  According to the NIM, the two challenges are to assure that all have access to basic prevention and treatment and to ensure that all Americans receive the value for what is paid into the system.  Laying out these “fundamental healthcare challenges” facing the US  has been just the beginning.  Putting together a strategy for improvement has included recognizing the difficulty providers face keeping up with new interventions and strategies of care due to the rapid changes of the information age.  The strategy needs to take into account their difficulty discerning which services and what intensity of services are necessary or right for the patient. The answer is found in the idea of a “Learning Healthcare System.”  What is a Learning Healthcare System?  It’s a change in the healthcare paradigm.  It is also a way to make healthcare in the US “patient-centered.”   Instead of the provider controlling the information, information is shared among all the constituents.  In this paradigm the point of care is the “new knowledge engine.”  With the capacity of computers and networks, electronic health records are possible and sharing  information is easier.   Creating partnerships will be important, while maintaining security and privacy. Additionally, patient participation in their care will need to be enhanced and encouraged. Recent data from the RWJF website reveals that people in the US spend more time getting information on car buying than they do on choosing healthcare providers.  In choosing hospitals and physicians, half of all consumers relied on word of mouth recommendations from friends and relatives.  When choosing specialists and facilities for medical procedures, most consumers rely exclusively on physician referral.  Use of online provider information was low, ranging from 3 percent for consumers undergoing procedures, to 7 percent for consumers choosing new specialists to 11 percent for consumers choosing new primary care physicians.Communication between provider and consumer will be crucial, especially a willingness of all parties to learn.  Consumers will need to be engaged in the process. Of course, increasing health literacy (see previous blog entry) in the general population will be essential.The reality?  E-Health records are being created.   Now a repository and intermediary of research is being established with the Patient Centered Outcomes Research Institute (PCORI).   The PCORI website, refined the following definition of Patient Centered Outcomes Research. Patient Centered Outcomes Research (PCOR) helps people make informed health care decisions and allows their voice to be heard in assessing the value of health care options. This research answers patient-focused questions: 1.“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?” “What are my options and what are the benefits and harms of those options?”3.“What can I do to improve the outcomes that are most important to me?”“How can the health care system improve my chances of achieving the outcomes I prefer?”To answer these questions, PCOR would: Assess the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making; highlight comparisons and outcomes that matter to people;Be inclusive of an individual’s preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;Incorporate a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and Investigate (or may investigate) optimizing outcomes while addressing the burden on individuals, resources, and other stakeholder perspectives.Increasing use of social media, provider and patient acceptance and participation  in e-Health records and information sharing, using effective health communication strategies,  all add to the excitement and opportunity for altering the US healthcare system from what is constantly referred to “unsustainable” to one that provides• The right care• To the right patient• At the right time For the right price.” (NIM, 2008)

Post Three–Bringing Targeting, Tailoring and Engagement Together

Ok…the first post in this series called Targeting versus Tailoring describes the difference between the two.  To summarize, a targeted message is created for a specific group of people.  A tailored message is directed to one individual, created specifically for that one person.  Both strategies of reaching the audience require formative research. Post two is called Engagement…making it relevant. As one commenter notes, targeting has been done in the advertising world for many years.Reaching an individual through tailoring is comparatively new.Research that has been done on tailoring has been in phases.The first phase compared tailored messages to nontailored messages.This research, conducted in the 90’s, consistently showed that using tailored messages resulted in greater recall of the information.The messages were more carefully read and believed to be more relevant than nontailored messages.Positive behavioral change was documented. Another phase of research examines the aspects of tailoring, like message source or cultural variables.  In one study in African American churches, message source was tested because formative research had  revealed much distrust of research. yet confidence in the Bible and scripture to provide health guidance.  In the study, the tailored communications were either endorsed by the church pastor or by nutrition experts.  Those who received the pastor sourced messages thought them more credible than those endorsed by the nutrition experts and pastor endorsed recipients had greater intention of modifying their health behavior. Okay, so now how do we use tailored communications?  Although the results of intervening at the individual level are impressive,  people do not live in a vacuum.  Indeed, sickness is not a result of personal failure.  Use a multi-level intervention, one that takes into account social networks social norms, and environmental factors, for example.  Although more complex to conceptualize and execute, multi-component health promotion interventions are more likely to result in lasting behavior change. Next post…gamification of health interventions

Part Two: Engagement…or how to make it matter

For a long time cognitive scientists have been studying how we receive and process messages.   Petty and Cacioppo are the big names in this area of study, coming up with the Elaboration Likelihood Model or ELM to describe what they observed.  In a nutshell they found that we process messages in two ways, via  central or  peripheral processing.  As health communicators our goal is to engage indepth or central processing.  When people have little interest in a message, they tend to process it peripherally.  When processing peripherally, they don’t think about the arguments in the message but rather they  use cues like attractiveness, reputation or credibility to guide their decision to perform a behavior.  Alternatively, central processing is energy consuming.  It is only engaged in when a message is  very important and relevant to the person and when the person has the intellectual or technical ability to process a message centrally.    Processing centrally requires careful listening and evaluation of message content.  Whenever possible you want to promote central processing.   When you’ve thought about an issue and made a decision to perform a recommended behavior your’re more committed to really doing it.   Central processing is more likely to lead to long-term and stable change.

One of the best ways to engage the central processing route is to make your message relevant to the audience.  Tailoring achieves relevance. Studies have found that compared to non-tailored messages, tailored messages are more likely to be read and remembered, rated as attention getting, saved and discussed with others and perceived as personally relevant. Tailored messages are patient-centered.  Patient-centered messages are associated with better adherence to treatment than are topic-centered messages.  In particular, they can enhance self-efficacy, or the perceived ability to complete a specific task.Here is an example to illustrate the tailoring process.   Suppose we were to develop tailored messages to encourage an adult female to quit smoking, an interview or assessment survey would be used to query her about her life to better understand her smoking behavior.  The assessment would find that her name is Shelia Shephard, a cashier at a supermarket.  She identifies herself as an African American; she is 43 years old and has been smoking since she was 14.  Her smoking is done to relieve stress.  She has tried to quit before but has been unsuccessful.  She wants to try to quit again but can’t afford nicotine alternatives that can help her quit.  She socializes with other smokers during breaks.  Her main barrier to quitting is low self-esteem after having been previously unsuccessful in quitting; she believes that she will not reduce her risk of cancer by quitting.  A tailored message designer might create a message addressing her by name, acknowledging her long-time identification as a smoker and providing her feedback on ways to reduce stress without smoking.  The message would address her low self-esteem by providing supportive messaging to increase self-esteem.  It might provide her with coupons for nicotine gums and include a testimonial from a cashier who has quit.

The pace of interactivity has accelerated.   The opportunities for using tailoring have moved from print to Web to Blackberries.  Connection is just a text message away.  With the advent of tracking devices that can input data for real-time monitoring, the possibility of tailored texting to support behavioral change is not a pipe dream.  It is reality.  And that’s not all folks…stay tuned for more…

Searching for the smoke-free zone

West Virginia’s mountain are sharp and faceted compared to the rounded Appalachians of Virginia.  Kentucky’s horse country trots past and Indiana and Illinois’ corn fields reach to the big skies. It is a beuatiful drive to Minnesota.  But at each of our stops we have to hold our breath…smokers seem to rule.

Traveling from North Carolina which is a tobacco farming state, we thought we had seen the worst.  But no, we were in for a surprise.

As you can see, we were driving through states with the highest prevalence of adults who smoke.  Approximately 46.6 million U.S. adults smoke cigarettes and each year around  443,000 people die from smoking or exposure to secondhand smoke.   Those who are exposed to secondhand smoke, an estimated 88 million Americans,  include 54% of children. Kids whose parents smoke are more likely to miss school from exposure to the second hand smoke than children of non-smokers.  Every year an estimated 3000 nonsmokers die from lung cancer and 46.000 from heart disease through exposure to secondhand smoke.

Research shows that laws and policies are most effective in protecting nonsmokers. The most effective are
increasing smoke-free regulations and laws. increasing the unit price of tobacco products, restriction of minors’ access to tobacco products and finally insurance coverage for tobacco use treatment.

Secondhand smoke gives me migraines.  How does it affect you?  What more should be done to protect those of us who don’t smoke?  Your thoughts…..

Part One: Targeting and Tailoring Messages: What’s the difference and why should I care?

Think about doing a little target practice.  Imagine the target board…concentric rings coming to a small bull’s-eye in the center. What kind of gun would you choose to hit the mark?  A sawed off shotgun or a rifle with a scope?  The choice is obvious. Airing PSAs or producing health websites with messages crafted for a “general audience” is like shooting a target with a sawed-off shotgun.  The buckshot may or may not hit the paper marker, some may hit the bull’s-eye but a lot of the shot will miss the mark.  One way to achieve more accuracy is to direct your message at a smaller audience.
Targeting refers to the process of segmenting a general, heterogeneous audience into smaller more homogeneous groups. Targeting is based on the advertising principle of market segmentation.Factors that are generally used to segment a population are age, sex, race, income, ethnicity, location and diagnosis.It involves developing a single intervention approach for the subgroup. The subgroup can be very well defined, for example, Chinese-American men, aged 50 to 60 who frequent a certain health center.Targeted materials are based on an aggregate profile of a specific population subgroup.  The focus is on characteristics that are assumed to be shared within the group, hopefully based on formative research.  For example a heart healthy cookbook might be created for a group of Latina mothers in San Antonio. It might be written in Spanish at a sixth grade reading level, use Latina models to explain messages and include testimonials from members of the Latina community about the importance of heart healthy nutrition.

Targeting and tailoring are not the same thing.  To carry the target practice analogy to its conclusion, if you use a rifle with a scope you are extremely likely to hit the bulls-eye.  Tailoring is like hitting the bull’s-eye.    Tailored messages or strategies are not for a group of people but are created for one particular individual.   The process of tailoring segments your target audience to its smallest unit, one person.   Messages, derived from an assessment answered by that individual,  are crafted to address individual level factors that relate to the health or behavioral outcome of interest.  Psychosocial behavioral determinants, like perceived barriers, or perceived self-efficacy to engage in behavior change, are collected in survey format.   Given the capabilities of computers and software, crafting a message specific to one recipient is possible.  In fact it is possible to create tailored message programs to maximize individuality by producing thousands to millions of combinations of tailored messages.So, why should I, as a health communicator, care about targeting and tailoring?  Stay tuned to find out.

A Slice of Life?

Have you ever been to a brain slicing? 

I have and I must say it is as gruesome as it sounds.  I attended brain slicing one summer in college at UNC Medical School.  The chief slicer was a pathologist with the bushiest eyebrows I have ever seen.  He would waggle them at me just before he put the person next to me on the spot with a question.  Often he would waggled those wooly worms at a student and hand over the knife.  That poor med student had to cut the brain of someone whose pulse they had taken the day before. 

Needless to say, brain slicing was one reason I decided not to go to medical school.  However I digress.

The reason I’m going into all this is because of the recent study on strokes, in the journal Stroke.  Apparently, the shuffling gait that we have associated with “old age” may not actually be a phenomenon of age but of cardiovascular disease.  Tiny strokes in the brain may be the cause of a loss of balance, rigidity and loss of mobility.   These changes can’t be seen at the macroscopic level of a brain slicing session.  These changes are microscopic but significant.  So how does this study forward health or our existence?  Well, according to Aaron Buchman, the lead author of the study, what we thought was an inevitable result of getting old may not be inevitable but may be preventable and could be treated. 

In the meantime, the one thing I learned from my experience in brain slicing was to stay away from men with bushy eyebrows…they creep me out.

See the NPR story here.

Just The Fats (whoops, I mean Facts) Ma’am

“How about super-sizing that?” commercials on TV taught us. Guess what? We’re the ones who have been super-sized. Adult obesity rates are increasing across the United States. In fact 16 states increased over the past year and not one experienced a decrease.

Obesity rates have grown fastest in Oklahoma, Alabama, and Tennessee, and slowest in Washington, D.C., Colorado, and Connecticut. The South continues to experience the most increases with nine of the 10 states having the highest adult obesity rates. States in the Northeast and West tend to have lower rates. Mississippi maintained the highest adult obesity rate for the seventh year in a row, and Colorado has the lowest obesity rate and is the only state with a rate under 20 percent.

Just as adult obesity rates have grown, childhood obesity rates are lumbering ever upward. The highest rates (20 to 25%) are in eight states, Texas, Louisiana, Illinois, Georgia, Kentucky, Tennessee, Arkansas and Mississippi. Just out from the CDC is a study of 17,000 Americans conducted between 2005 and 2008. It found that half of all Americans drink a sugared beverage each day. Males are more likely to consume the sugary drinks than females, especially teenage boys. Again, lower income adults are more likely to drink sugary drinks than more affluent. Portion size seems to be a factor. For example, regular Coca-Cola’s come in a 12-once can that has 140 calories. According to CDC and others, to be healthy, people should limit their intake of sugary beverages to 64 calories per day. How many people do you know drink only half a can of Coke? No one…there’s no way to save the rest of the can…it will go flat.

A link has been found between sweetened drinks and the increasing obesity rate in the US.   With the increase in obesity rates comes an increase in diabetes rates. Only 15 years ago the highest state-wide rated was just under 20%; now 20% s is the lowest obesity rate. In that short amount of time, the number of states with over 7% diabetes rates has increased from 4 to 43. Hypertension rates have also shot up, every state reports rates above 20% and nine report rates of 30%.

The BBC reported Sept 1 that there has been a 30% increase in strokes between 1995 and 2008 in people ages 5 to 44.

The cost of obesity is hefty too. Obese individuals spend an average of $1500 more annually on health care and consume 30% more of health care costs than healthy weight individuals. That’s one beefy price tag.

So, what’s to be done? Stay tuned…same Fat time…same Fat station!

(This information is a short summary of a 2011 report by the Robert Wood Johnson Foundation (RWJF).The map by the Trust for America’s Health (TFAH) can be found on healthyamericans.org as an interactive map. Two versions are available, one for adult obesity rates and the other for childhood obesity rates by state. To see an interactive map of obesity rates by gender in see the Kaiser Family Foundation website.

Low health literacy may lead to poorer health

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

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

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

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

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