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.
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?
I sit and try to write, but start sneezing. I've got a list of things to write about, but I'm aching from some sort of virus exacerbated by too much shoveling after the great storm. I've tried to rest as much as possible, but I have a restless mind and have been thinking about a lot of different things. One is the 1928 silent movie, Street Angel.
The other day someone tweeted about a massive open online course, The Language of Hollywood: Storytelling, Sound, and Color. I signed up, watched the first two lectures and then started watching the first movie.
When I have more time, I'll weave this into a broader story about creative problem solving, tying in McLuhan and Papert. At another time, I'll reflect more on what we can learn about storytelling today by looking at early films. At another time, I won't be struggling to stay awake and write.
So, let me reflect, for a few moments on Street Angel itself. We start off with a daughter committing a crime to get medicine for her dying mother. Today, we have a safety net, but it isn't in the best shape, and I can imagine a young Latina born in Connecticut in a similar circumstance trying to get medication for her ailing undocumented mother.
Angelica, in Street Angel, becomes a fugitive, and their is no forgiveness for those who have broken the law. Again, we see parallels to modern day America. Some people broke the law a couple decades ago, coming to this country illegally. But too many people cannot forgive them, cannot give them a path to citizenship because they broke a law twenty years ago. Right now, there is legislation being considered that would ban citizens of Connecticut who have been convicted of drug related crimes from ever getting public assistance. No chance, ever, for forgiveness. Yet these are probably the people that need it most, and perhaps where we could have the biggest impact, lifting a person out of a life of crime and a circle of poverty.
A twenty-first century Street Angel, Street Angel 21, wouldn't be a silent black and white movie. It might be a mashup of graffiti, pictures, video, and social media, trying to address problems that have been around for a century.
Today, there is a re-vote in the Fifth Assembly District in Connecticut, where the primary ended up a tie back in October. Leo Canty, a Vice President of the American Federation of Teachers in Connecticut is running against Brandon McGee. I've known Leo for a long time, and he has contributed ten dollars to my campaign.
Recently, the Great New England Public Schools Alliance has spent nearly $32,000 as an independent expenditure on Mr. Canty's opponent. That's more than Mr. Canty can spend as a participant in the Citizens Election Program. To me, this appears to be another example of an outside interest group trying to buy an election.
Education reform has always been a key interest of mine, and I'm always interested in what people, and organizations actions say about their real interests. I'm not sure that the behavior of this organization sets a good example of how people should be involved in the political process.
A while ago, I received their endorsement survey. Given my concerns about the organization, even before their latest actions, I set it aside and didn't complete it. Last night, I returned to the survey and completed it. It may be that the survey has changed over time, or that it is an adaptive survey that didn't ask more probing questions depending on the answers, however, I have to say it was one of the worst constructed surveys I've encountered so far.
It asked three yes or no questions:
Do you support paying teachers substantially more for effectiveness?…
Do you support empowering parents by giving the majority of parents in a failing school the option to effect a turnaround or transformation of that school?…
Do you support the promotion of appropriate reforms to governance structures, such as the newly created Commissioner's Network, which prioritizes the interests of students?
I answered Yes to all three, and added a comment:
I have signed the Common Cause Fair Campaign Pledge:
'I pledge to ask all outside spenders to refrain from outside spending in my race, including all
independent expenditures and issue advocacy advertisements that attack my opponents or
party or support my candidacy or party;'
I've often talked about how we should not judge the success of our students, their teachers, or their schools by how well students fill out multiple choice tests. It is very disappointing that this education reform organization resorts to multiple choice questions for their endorsement.
As an illustration, I think my answer to their second question reveals some of the problems. I believe that GNEPSA and I have very different views of how to empower parents. My view is that the process needs to be very fair with key checks and balances. For example, the best way to empower parents to change schools is to have fair local elections, with no outside money pouring in, for not only State Representatives, but also for local school boards. We need level playing fields in the discussions about how to reform schools, and not just money pouring in from large organizations that have agendas beyond the education of the students in the district. Another way to empower students is to get parents more involved in the schools, through parent teacher organizations. Parents and teachers need to be encouraged to work together to improve the schools, and teachers should not be vilified for conditions beyond their control as many education reform organizations tend to do these days.
Yes, we need education reform. It is tied to electoral reform and promoting fairness and transparency. I don't think the multiple choice questions or the third party expenditures of GNEPSA does anything to achieve this.
It's been a busy few days, and I'm behind on my blogging, but I did get a chance to write the following post this evening, which I've also shared at the Bethwood Patch.
As I scanned Facebook this evening, I found a picture that one of my elementary school classmates posted of her first grade class. I was in a different class, but I recognized many names of long time dear friends. It was a grainy black and white picture of the kids standing on the school steps.
One person commented, "Everyone looks so cute! Remember when girls couldn't wear pants to school? I think we were in 5th or 6th grade when this rule changed." It was a different time and a different town. A small town of less than ten thousand, where a lot of college professors lived. It was a town that helped shape who I am today.
Then, I stumbled across some pictures of a friend that I got to know right after college. We went to the same church in New York City, a church where many of the young parishioners went on to become priests. For some, it was a fairly quick journey, for others it took many years. My friend was one who took a longer, more circuitous route to the priesthood. She was up in Hartford celebrating the Ordination to the Sacred Order of Deacons where another friend from church in New York was being ordained.
The pictures of the bishops and the ordinands in their fresh scrubbed faces, most likely just out of divinity school added to my rosy thoughts about education.
All of this set an interesting contrast to my experiences Monday night when I went to the Amity Board of Education meeting. I went to speak about my opposition to using police dogs to search students for drugs. Yes, there were drugs at my high school thirty five years ago, and I'm sure there are drugs at Amity, but somehow, the experiences were radically different.
High school is a very difficult time for many people. My high school classmates have shared reflections back on those days, "the tears and fears and feeling proud, to say I love you right out loud" at a school dance. "The moons and Junes and circus clouds." Yes, I sang "Both Sides Now" with my school chorus.
In many ways, the public comments at the Amity Board of Education focused on keeping our children safe from drugs, their right to go to a drug free school, where school policies were not considered a joke, and where there wasn't peer pressure to try drugs. The other side of the public comment focused on the students civil rights to not be subject to unwarranted searches, and the efficacy on using police dogs to curb drug use at the high school.
If I honestly believed that using police dogs would prevent drugs from being at the school, would cause students not to view school policies as a joke, and would eliminate the peer pressure to use drugs, that I'm sure exists at Amity today, like it did at my high school thirty five years ago, I might be more inclined to support the opinion of those that would like to see broader use of police dogs at the school. However, I don't believe that would be the result, if anything, I fear the opposite result. Students will still find ways to use drugs. They will still heap scorn on school polices, and they will still pressure classmates to engage in dangerous and illegal activities.
Yet returning to Both Sides Now, it's school's illusions I recall. I remember best, things like singing in the choir, playing in the band, being in musicals. I never was particularly talented, but I had the chance to participate in something beautiful, something bigger than myself.
My high school always had students going to All State for one reason or another. I had some incredibly talented friends and classmates, and that is what I'm most happy to remember. The Amity Board of Education meeting started off recognizing great teachers, and incredibly talented students at the high school. It ended with the board voting to approve setting aside money for building a black box theatre at the school. It struck me that those who pushed hardest to expand the use of police dogs at the school were also the ones who showed the most resistance to supporting the black box theatre. Perhaps, this too, reflects both sides of school.
I savor my positive memories of high school, the school's illusions of talent young students with a great life ahead of them, as opposed to a view of students as suspected drug users on the road to ruin. I hope our school board remembers this part of high school and seeks positive ways to help the students reach their dreams, whether they need help with substance abuse issues, or hitting the high note on Broadway.