What's In It For ... ?

The movie Street Angel starts of with Angela's mother dying for lack of medicine. It is a stunning movie both visually and emotionally, though having lost my mother a few months ago, it was a bit much for me to watch. We've come a long way from the silent movies of close to a century ago to Facebook today. Now, the emotional shocks I receive are from real people.

When I posted about Ash Wednesday, a friend from college commented about how this Ash Wednesday was hard for her. Her husband also died recently. Then today, I found that a friend from when I first moved to New York City lost her father on Ash Wednesday and another friend from that time period lost her father yesterday.

It sets an interesting backdrop to a question I've been struggling with this week, especially in terms of health disparities. How do we move from a culture of "What's in it for me?" to a culture of "What's in it for us?". If I were callous, if I believed in some virtue of selfishness, I might be able to shrug off these recent deaths. But I live in a culture of us, in a world where we are all interconnected, in a world where "each man's death diminishes me".

So instead of writing a blog post about upcoming speaking events or how Marshall McLuhan relates to the MOOCs I'm currently participating in, I pause to offer a virtual hug, and virtual donuts to my friends Becky, Kate and Judy.

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Creating Better Health, Part 2

On Monday, I wrote a blog post entitled Creating Better Health trying to pull together themes from patient education, the e-patient movement, discussions at the Mayo Clinic Center for Social Media and the Learning Creative Learning class at MIT.

Tuesday, I had a meeting with people from a health care foundation to talk about messaging around health care. It struck me how much money and effort is spent marketing unhealthy products, and how little effort is really spent encouraging Americans to live healthier lifestyles. Wednesday was mostly devoted to health disparity issues, and this morning started off on a similar note.

Then, this afternoon, I had a fascinating discussion that really helped pull some of this together. It seems like so much of patient education is about imparting information to patients. You have diabetes. You need to exercise more. You need to eat less sweets. It also seems like so much of this 'patient education' fails because patients aren't compliant with what their doctors are telling them.

Some of this may relate to health equity issues. Are the doctors imparting information providing information that is culturally aware? Perhaps they've been trained and think about difference between latino patients and caucasian patients. Yet perhaps this is too blunt a tool. My friends of Venezuelan descent are quick to point out how different they are from our Puerto Rican, Mexican or Argentinian friends. For that matter, there are similar differences between Italian-Americans and Irish-Americans, and then you get to families like mine. On my side of the family, there is English, Scottish, Irish, French, Dutch which has been mixed together for generations. We have certain traditions around food and family gatherings. On Kim's side of the family, there is Italian, Irish, English and Russian, some of it much more recently arrived in the United States and mixed together. There are a different set of traditions. As a family, we try to mix all of this together that into something that is uniquely part of our family.

A couple of us have specific dietary concerns related to our health so meals and traditions are created that specifically relate to our cultures and our health conditions. My wife takes great pride in her ability to create great meals that meet all the family requirements. Every family is different. How do other families create meals that meet the specifics of family tradition and health needs? This probably is something that needs to be created by the family, and not imparted by medical providers.

When you look at people confronting major health challenges, they gather at online sites, where they share experiences and ideas, where they discover, together, aspects of their diseases, perhaps information that the medical community has yet to discover. This seems to be constructivist learning about health which is far different from most patient education. The patient support sites, are, in certain ways, massive open online courses (MOOC).

As an alternative to traditional patient education with low compliance rates, can we design massive open online courses where patients with more common and in some cases less threatening diseases can participate in shared learning experiences that result in better health? It seems like an interesting challenge.

Related to the MIT MOOC, I have set up a Google+ community LCL Health. If you're interested in exploring this further, please join us.

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Ash Wednesday

Yesterday, I received my mother's will in the mail. There was nothing unexpected about it and I already knew most of what it contained. Yet there was something difficult about it, like reading some of the final pages of a book you're not ready to finish.

I glanced at the news online. The lead story was about the culmination of a manhunt for an ex-LA police officer; more death and destruction; "for dust you are and to dust you will return."

Today is Ash Wednesday, the beginning of Lent, a period of penitence, reflection and discipline. Some friends give up chocolate for Lent, with a special dispensation for St. Valentine's Day. Others give up beer, with a special dispensation for St. Patrick's Day. Several of my co-workers are doing yoga every day for Lent.

I set out for work early today, surrounded by large piles of snow, hoping to find a parking place in the snow-hobbled city. In many ways, my Lenten discipline is just to get by.

In the afternoon, I attended the Health Leader's Fellowship Program. It is a discipline, a commitment to show up, to stretch and practice new skills. We are half way through the program and it seems like many of us a stretched almost to breaking, but as another member of the program commented, "We are here."

Yes, we are here, in the season of Lent, remembering lost love ones, stretching as part of one discipline or another. In forty days we will enter Holy Week, the week of the first full moon after the Vernal Equinox, a time of rebirth and thinking about resurrection, a time in which, God willing, we will say again, perhaps in a different tone, "We are here."

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Engaging in Health Care Discussions

One of the recurring themes in my recent blog posts has been my participation in the Connecticut Health Foundations Health Leadership Fellows Program. It has been a very engaging program which has given me lots to think about. For those interested in participating next year, applications are due April 1st. Please check out the program and see if it might be for you. If you have questions, feel free to contact me directly.

If you have an idea about how to help achieve health justice in Connecticut, you may want to check out the Health Justice CT Challenge. Submissions should include a simple two minute or less video describing the project. I hope to share some of these videos in the coming weeks. Just remember, what matters is the idea, so if you have a great idea, but can't make a great video, make a simple video and let people see the idea. The deadline is February 22nd. Last year, there were some great ideas proposed, and hopefully we'll see some really good ideas proposed this year as well.

If you've got smaller ideas, consider texting them. The Community Health Center Association of Connecticut has a program called Txt 2B Heard. Just text the keyword txt2bheard together with you ideas about how to make health care better to 24587.

If you're looking for more of a discussion, consider joining the Health Care in Social Media CT Group We have monthly meetups and weekly tweetchats. The Meetups are the first Wednesday of every month and the Tweetchats are every other Wednesday at 3 PM, using the #hcsmct hashtag.

Finally, if you're looking for a panel discussion, consider attending the Connecticut Social Media Breakfast on February 22nd at Quinnipiac. February's breakfast will be on Social Media and Healthcare and I will be one of the panelists.

There's a lot of interesting discussions about health care going on here in Connecticut, and I hope you'll find ways to join in.

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Creating Better Health

Today I listened into the first session of Learning Creative Learning. This is an online learning event run by the folks at MIT's Media Lab rooted firmly in constructivist theories of education. I alluded to it in my blog post yesterday about a learning event taking place around the language of Hollywood, and I hope to tie these events together with some other events soon.

But first, I want to explore my initial reactions to the first lecture. I had read the paper ahead of time, and I've read a lot of related material, so nothing new jumped out at me, with one exception.

This time, I was approaching this whole creative learning thing from a different context. I'm part of the patient education committee at the Community Health Center, trying to help underserved patients learn how to better care for themselves. I'm in the Health Leadership Fellows Program of the Connecticut Health Foundation, trying to find ways to address disparities in our health care system. I've been spending a lot of time thinking about the whole e-Patient movement, and I've been trying to bring some of this together in terms of the Mayo Clinic's Center for Social Media.

The Center for Social Media draws in a lot of e-Patient types. e-Patients are "empowered, engaged, equipped and enabled". Some of them even went to MIT. They gather in groups like the 'Society for Participatory Medicine' and I have to wonder if the Society for Participatory Medicine was influenced by Henry Jenkin's idea of Participatory Culture.

It all fits nicely together for those who are already empowered and have a love of learning, but I have to wonder how it can fit with patient education where I work; the fifty year old man from Puerto Rico with a heart condition and no family doctor, the young muslim women struggling to get by in a society which doesn't embrace them as they deal with domestic violence at home, the newly diagnosed diabetic patient with complicated cultural relationship to food who lives in a food desert. Where does creative learning fit in for these people? How do we help people who have been downtrodden for years to become empowered? How does this relate to the frustration of providers to get the patients comply, take their medicine, get exercise, quit smoking or whatever?

How can we help underserved patients create better health? That's my question for tonight. Care to join with me in this?

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