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e-Patient Dave deBronkart

Change Advocate for Participatory Medicine / Let Patients Help, Society for Participatory Medicine

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"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

"e-Patient Dave" deBronkart is an advocate for patients being "E": empowered, engaged in their care, equipped, enabled, educated, etc. As described in his talk from TEDx Maastricht, he beat a near-fatal cancer, supplementing his great medical care by using the internet in every way possible.

Today, as blog manager and volunteer co-chair of the Society for Participatory Medicine, he has studied the social, technical and sometimes political factors that make healthcare ignore the potential of patients contributing to their care.

In his TEDTalk, he quotes senior physicians who have said for decades that patients are the most under-utilized resource in healthcare.

Why is that? How did it get to be that way? Is change valid? Why now, and not 20 years ago? And what can we do about it?

Watch the talk, and come back to discuss. *Your family* will be affected someday.

ADMIN EDIT: e-Patient Dave has requested that we keep this conversation open for 1 week. After 2pm ET July 27, he will periodically check in to answer questions and respond to comments.

Topics: Healthcare
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  • Jul 27 2011: My question would be HOW can we raise the numbers in empowered patients, the SM using, well informed patients seem to be a very small tribe
    • Jul 27 2011: by giving them a forum, stage, platform in EVERY conference about healthcare. Every one of them should have at least one patient in it. Like i said THEY are the real experts in HAVING the disease.
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        Jul 27 2011: YES, Lucien! Your TEDx Maastricht was distinctive in that the first speaker you announced was a PATIENT, and the entire day was about patients. Compare that to the "Medicine 2.0" conference at Stanford next month: only ONE PATIENT speaking. Hm! What will they talk about? Probably not what patients would want them to!
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        Jul 27 2011: In the past 2 years I started getting invited to policy meetings in DC, and the first thing I noticed was that although they would pay my expenses, I had to take time off work unpaid to do it. All of Washington is that way. So guess what we get? Policies that were developed without patients in the room!

        The result is predictable: policies that LOOK like they were developed by people in the business, not people whose lives are at stake.
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          Jul 27 2011: The reimbursement business does not work when it's your life or the life of the person you love. I found how easy the transformation to assertive patient really was much easier than I ever would have anticipated. It simply seemed like the logical thing to do.
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        Jul 27 2011: this is a good idea and would help educate those working in HC on what patients are asking for.
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      Jul 27 2011: I agree. Informed patients need to keep coming to the table AND this picture needs to be told via traditional and new media.
      • Jul 27 2011: every conference abt HC i attend or speak at i start with this question : http://www.slideshare.net/lucienengelen/lucien-engelen-keynote-doctors-20/7 that could be a start. Next we have to see patients AS IMPORTANT as other speakers that we ARE paying for their expertise. Challenge though will be to distinguish authentic epatients or i-patients (who just looked something up in the internet)
      • Jul 27 2011: Hi Jody I have a feeling that the mainstream patient does not find her/his way in the new media, so a breakthrough can only be found via the traditional media. Maybe we could give Oprah a call?
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          Jul 27 2011: LOL - unfortunately Oprah took an excellent opportunity - the Discovery Health Network - and turned it into a stage for all it friends. It could have been a superb forum for launching a series on ....let's say...The Empowered Patient....

          Seriously tho, I disagree about patients not finding their way in new media. I actually think they are the ones building the roads.
      • Jul 27 2011: I totally agree that they are the ones that have to lead a new era in Healthcare, but I hesitate to believe that the current SM will do the trick. In my country pop. 16.5M Only 30k are using Twitter on a weekly basis, that's less than 0.2% No way this group is in any way representative for the entire population.
        Nevertheless amoung the 30k are beautifull and very inspiring examples of Patient Empowerment, what puzzles me is HOW can we raise the Participation Levels and by doing so the Impact of Empowered Patients
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          Jul 27 2011: Remco, Twitter or Facebook is certainly not enough to reach everyone. (Remind me, what's the Dutch equivalent of FB?) Social media is just the most common method right now, because it is so "liquid" - people on those platforms spread ideas as quickly as spilled water runs across a table.

          I'd like to see a popular movie about this. Many years ago in the women's movement, an important movie was "9 to 5," which told ordinary people an entertaining story about a boss who was a rude sexist pig, while three empowered women decided they weren't going to take it anymore. Can we create an entertaining movie like that about patients becoming awake?

          Amazingly, those three women were Dolly Parton, Lily Tomlin and Jane Fonda - three VERY different female icons. It was a great way to reach a very big audience.
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          Jul 29 2011: Hey dave, I think you mean Hyves. (the dutch social network site).

          The liquidity of SoMe and the fact that demographics no longer dictate who your friends are DO create real-life interaction. Especially in a small country like the Netherlands.

          Creating a film is an idea, although I don't believe I would go out to see it. ( the subject not being attractive enough) But I do believe that it must be possible to get media attention and collaboration ... after all.. if you aren't a patient now, chances are you will be in the near future.. :)

          I believe the way to raise the participation levels is through education. Wether it be on (med)schools, or introduced as a standard question on your social workers'/childconsultationcenter/GP's form.
          Maybe by hosting evenings in the local community center?
          Oeh, I can think of many ways!
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      Jul 27 2011: We all become patients or loved ones from patients sooner or later, right?
      We don't teach children not to go with strangers √°fter they met one. So why would we teach patients how to be patients after they have become one.
      Should there be a part in general education that teaches you this? Aside from learning to read, education should teach you about selfesteem, about healthy living, about handling money, and also being an empowerment involved individual when it comes to your health.
      • Jul 27 2011: @ragna great idea to integrate patient empowerment in general education, I guess it could contribute to responsible citizenship to empower yourself in a good way.

        @ePatient Dave who should we cast for our Movie apart from you and Oprah, but seriously I think a movie could lead to a quantum leap in patient empowerment. Let's elaborate on this one.
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          Jul 28 2011: I guess in the information age part of is it that you teach people how to distinguish 'good' and 'bad' information.

          Although I hate the sound of it, (it sounds a bit BigBrother, or back-to-the-fifties) I strongly feel for your 'responsible citizenship-class' you could embed all sorts of things in there!

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