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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: So, I'm starting to see one answer emerging over and over here, re "WHY are patients underutilized?" One answer: because WE DON'T SPEAK UP, STAND UP, ACT UP and ASK FOR IT.
    • Jul 27 2011: I once had a doctor who would answer any question... if you could ask it. He ran in and out of the room so quickly he was sometimes gone before I came out of "wait" mode and into an active analysis. I finally dealt with it by planting myself in front of the door as soon as he walked in. Once he COULDN'T leave, we were able to actually discuss problems.

      I understand the pressures on him, but why should this be necessary? Shouldn't the process start with an assessment and move forward from there? Should an assessment be "Well, she's upright and breathing, she can't be too bad. Next patient!"
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      • Jul 27 2011: You are correct Nafissa, patients do trust the doctors too much. Just think if Dave had not done any research. We would not be here today speaking with him! You may not have to be a skeptic as much as just ask some questions.
    • Jul 27 2011: Starts with taking up stages, using SoMe, write articles and tryo find ways to be head. Of all era in history patients now have the most tools ever !
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      Jul 27 2011: Less than 5 minutes ago: Sadly this is very true my mum passed away from Cancer 15 years ago. SHe knew something was wrong and the doctors kept telling her that is was nothing to worry about. She went to several doctors and indeed trusted them even though her gut feeling was that something was clearly not right. If only she had the online communities back then that we have now. It would have probably empowered her to speak up, voice her concerns and ultimately would have saved her. SO I truly believe it is emportant we help patients feel like they are worth listening to.
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        Jul 27 2011: Absolutely. I'm sorry about your Mum, too. How can doctors determine someone's treatment if they don't listen? It boggles the mind, doesn't it? But I know how often this happens. I'm talking with a 38-year old, recently diagnosed w/rapidly developing cancer, who PUSHED and argued for a mammogram because she felt "something was wrong." That persistence, that argument probably saved her life.
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          Jul 27 2011: Thank you, you are too kind. I think my mum's story is one amongst many sadly.
          I think in some bizarre way there is still some sort of 'tabou' between the patients and the doctors, and even between patients sometimes. This is why I think 'anonymous' online communities could potentially be life saving as people are more relaxed to talk honestly about what they are feeling and where and what exactly they think is wrong. This is especially the case with 'non-commercial' deseases, the ones ones is to 'ashamed' to talk about.

          She definitely did the right thing in pushing, it is her life after all, she is fighting for.
    • Jul 27 2011: But is that really ALL? Not standing up or failing to act? This has to be a two way street, there is something else we may be missing, but what?
    • Jul 27 2011: Not all patients are assertive... those that are not assertive are NOT STUPID. They just don't speak up. The attitude that we MUST be assertive to get treated as a human is OLD.
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      Jul 27 2011: Like the "unspoken" best practice we all adhere to within #hcsm - if you are an office that won't email with patients (and hopefully you also tweet/text/etc) for appointments, refills and labs - then we are moving along to the next office that will.

      We, as patients, need to do the same. If you aren't getting what you need from your practitioner - FIND ANOTHER ONE. Create the demand for better healthcare. The pack will follow.
    • Jul 27 2011: I agree that patients don't always prepare their information, and don't always speak up. But clinicians don't always listen, and don't make time or room for the patient to ask when the patient is ready. For example, a serious diagnosis is usually greeted with shock by the patient, and questions are only formulated much later. Is there a handout from the doctor, including written information summarizing the condition, treatment options, prognosis, and resources for help? In the hospital setting, one of the best resources for this is the medical librarian. Some forward-thinking hospitals are including their librarians in the team, as they can follow up with print information, websites, support groups, etc. when the patient is ready.
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      Jul 27 2011: I think it starts out with your starting position. Patient and physicians need to share and work together. It is like being on a climbing wall. You need someone to check your equipment, and secure your line. Though your role might be different, your goal is the same.
      The sharing part is the part that needs to be taught. Taught to the workers in healthcare ánd to patients.

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