Participatory Medicine: “There might be something to this”

e-patient Dave wrote me recently and asked:

Do you have a post you’d like to submit, in which you discuss Participatory Medicine either philosophically or from the physician’s perspective, so that docs and health leaders who read it think “Man, there just might be something to this”?

His request hit on a self-acnkowledged weakness (or strength, in the social media world) of mine, which is that I am not good at being prompted what to write. So, even though I missed the terrific Participatory Medicine Grand Rounds, I thought and thought about it, and I decided (spontaneously) to write something, and to show something.

What I want to write

In a post I wrote after visiting the team behind the MiVia.org personal health record for farm workers in California, I laid out this scenario. See if it helps you visualize what it could be like not to participate in your own health care.

Imagine that you were working internationally and had a serious stomach ache and needed to see a doctor. When you went into the medical clinic, the doctor asked you what medicines you were taking and what the status of your medical conditions were. What if you didn’t know or couldn’t tell them because you were in so much pain or you had seen a doctor but they didn’t give you a copy of your medical record. What if you lived in that same community for 5 years, but weren’t sure if you needed any medicine or treatment to prevent illness, and no one was keeping track. What if it felt like you didn’t belong….

Maybe this scenario is not far off from the health care you receive today, in the United States.

The title of the post is “Because Everyone Wants to Belong.” An important reason for supporting Participatory Medicine is that everyone not only wants to belong, they deserve to belong.

What I want to show

This is a piece of art that grabbed and made a huge impact on me within seconds of viewing it, at the National Portrait Gallery.

It shows the work of a person who fought to promote participation, Eunice-Kennedy Shriver. The artist is David Lenz – “Lenz, whose son, Sam, has Down syndrome and is an enthusiastic Special Olympics athlete, was inspired by Shriver’s dedication to working with people with intellectual disabilities.” (source: wikipedia)

She set out to change the world and to change us, and she did that and more. She founded the movement that became Special Olympics, the largest movement for acceptance and inclusion for people with intellectual disabilities in the history of the world. (from Statement from the Shriver Family)

You can see the drive … in her eyes. This is what excites me about participation. I can’t help it.

See if you think there’s something to participation in any or all of the above; thanks for reading, and watching.


7 Replies to “Participatory Medicine: “There might be something to this””

  1. Ted,

    You bet there is something I want to add:-)

    You raise a important point that has been on my radar for years. Participation in your care is, I believe, one of the most important things you can do to yourself. But in order to participate you must have a level of health literacy sufficient to help you make sense of what you'll read from classic "authoritative" sources, health communities, blogs or any other source of information. My friend Bruce Shriver just wrote a very short article that describes well the problem "A Dilemma for the Informed Patient".

    Because Participatory Medicine IS democratization of medicine, it is not surprising that the problem is akin to developing democratic behavior and institutions in countries that have always be rules by theocracies, dictatorships or other forms of absolute power grabbing.

    As George W. Bush demonstrated so well, you can't force democracy on a population. Just as we won't be able to force the growth of PM if the population doesn't get educated about the central necessity of health literacy.

  2. My gosh, Ted, what a great post. What a deep and inspiring perspective. I'm moved.

    And Gilles, as usual you take it to a deeper level, a much deeper level. You are one of the very few who see it a generation further into the future.

    So let me ask you – what if people don't WANT health literacy? Same as if they don't want democracy?

    To me the answer is, once again, education – teaching people what they need to know, including the consequences of one's choices.

    Thanks again, Ted.

  3. Dave,

    of course it's about education! You cannot change deeply help cultural views about health without a big dose of education.

    We are older people and basically know how to communicate with the older crowd. The people ACOR helps are mostly over 50 and it shows in the way they write and communicate with one another.

    But in truth we don't know what type of educational resources will be most effective with the younger crowd, those who have always lived with the Internet and who are not wowed by it. I know that, today, it must be on YouTube and Facebook. But what should be the content? A mystery that we should investigate before we launch the badly needed educational arm of the Society for Participatory Medicine.

  4. Electronic health portal or E portal is the new innovative technology that has been introduced in the recent years. It basically allows the patient to communicate electronically with their physicians, pharmacists and medical billing companies. Patients can discuss their issues online and can get updates on the recent advancements going around in the medical field.

    With the help of an E portal, patients can also schedule appointments and they can also track information regarding the latest drugs that can be beneficial for them. E portal can serve as a handy tool that will leave a positive impact on the healthcare facilities, and the cost and quality of the services that are offered to the patients.

    One important benefit of E portal system is that the patient itself can manage his condition by communicating with his doctor and with the pharmacist directly. Though this web portal is widely used by many doctors all over the world, most of the patients has also widely embraced this system especially those who have a chronic disease because it gets a bit tedious for them to visit the doctor so often. So, a web portal system can really help them in communicating and coordinating with their physicians and pharmacists in less time.

  5. Dear gentlepersons,

    I feel a post I write is more worthwhile if I get comments from you both – it's my version of Google-juice – epatient-juice perhaps?

    I like the question and the answer, from "what do we do for people who don't want to be educated?" to "what do we do for people who do want to be educated?" I think this is transition that you are helping to create, through the understanding that a lot more people want to be engaged than we think.

    It brought to mind this, which I just ran across for an upcoming blog post:

    "When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." – Hellen Keller

    We are now able to stop looking at the closed door. Isn't that great!

    Ted

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