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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: Do you believe young doctors in training are getting this concept, or is that generation of physicians ignoring the patients' knowledge and importance?
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      Jul 27 2011: EXCELLENT point, Ellen - some docs have told me they ARE trained that "patients can't handle the truth." Others have that pounded into them during residency, and others afterward.
      • Jul 27 2011: ere we have to act strong and fast as HC we have to educate freshmen to understand the tools as wel as the shift that is happening. in the "old" days knowledge was only accessible for the pro's (goes for HC as wel as lawyer, accountancy etc) with the internet now, and upcoming transparency this is going to be completely different. Argumentation as in HC is different from i.e.l travel, banking or music industry is rubbish.
        • Aug 10 2011: AGREE! Open Courseware is available for FREE online now! iTunes offers lectures from legitimate institutions. Many universities, including MIT offer free classes, as well. When I'm in need of information that I don't currently have the knowledge of, the internet is my friend and often my 1st source. Not all on the web is credible, but I expect that MIT or East Tennessee Univ, or any otherwise reputable source of information/education can legitimately help me fill in the "blanks". Some expect HCP's to know EVERYTHING about their problem. Sometimes, that's impossible. Why do drs feel so insulted by a person educating him/herself? "I don't know, I'll get back to you" makes me feel important & worthy. The 21st century has arrived, I don't always like it either. Transparency is good. Our doc recognizes our tech savvy and has gone so far as to cite journal articles to support his HC decisions. Guessing that he doesn't offer that to all, only after an interview of pt to see how much info is too much or how much the pt actually wants to receive. Seems like a good practice.
      • Aug 7 2011: This is such a sad reality! e-Patients need to revolt and say this is not acceptable - work with me! If HC providers won't discuss, then we (e-patients) need to stand up and say, I will not be returning to you!
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      Jul 27 2011: So, aside from plain old arrogance, any thoughts on how that could have come to be part of the culture? (ASIDE from arrogance)
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        Jul 27 2011: Back in the day...
        You trusted the post master to give you proper postage.
        You trusted the butcher to give you the right cut of meat.
        You trusted.
      • Jul 27 2011: We had a less educated population than we do now, and a paternalistic system of care. Having a peer-based conversation with an expert is still frightening to many people. Studies show that if patients aren't comfortable with the information, they won't ask questions or engage -- they'll play the passive patient.
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          Jul 27 2011: Sarah, more gold stars, and maybe some confetti!

          >>> We had a less educated population:

          Yes, especially 100 years ago. Imagine: today's most senior physicians were trained by docs who were themselves trained 100 years ago. They kept experiencing conversations with patients who almost entirely had no access to medical information. Si?
        • Jul 27 2011: Education is part of it Sarah, but we also had a less lazy culture than before. Prevention and followup are tantamount in this health care thing. Another point is that Western culture has a pill for that every where you turn. I think comfort should be a word never used in healthcare cause that means one of us is not needed!
      • Jul 27 2011: Maybe some docs rely on data from tests rather than data from the patient. Patients may feel better or be able to do more on a certain drug, but that difference isn't reflected in a test performed in the clinic.
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          Jul 27 2011: YES! There's an axiom going around, "Treat the patient, not the chart." Docs are reminding each other of that because they keep realizing they depersonalize the care.

          Many feel that patients' self-observations are lower quality than lab tests. To me those are two different dimensions.
        • Jul 27 2011: Has anyone heard of functional medicine? I came across it recently and spoke to my physician who is a DO about it. She had just gone to a conference with Dr. Mark Hyman. Many allopathic doctors don't treat individual patients, but conditions. Functional medicine looks at more than personal medical history to interpret what you need to heal. Interesting concept.
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          Jul 28 2011: Yes, Sarah, a functional medicine guy spoke last fall at TEDMED. Good presentation. And I liked its focus on what the PATIENT wants to achieve, not what the microscope sees.
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        Jul 27 2011: Being forced in the tredmill of bureaucracy doesn't help either I guess...
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        Jul 27 2011: I remember being called to my grandparents house once. They were both ill. Just a flu, but after a week that's quite enough when you are old. They dragged themselves out of bed to tidy the house before the doctor came. Then they were lying in bed in their best pyamas and only answered when asked something. They wouldn't have told the doctor that they were both coughing horribly for weeks if I hadn't thrown it into the conversation. He didn't ask....

        Times are changing!
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          Jul 27 2011: Great anecdote, Ragna. It shows (1) patients may HARM themselves if they don't speak up, (2) you as a family member made a difference.
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      Jul 27 2011: I also know part of training is what to educate a patient on and what to reserve from the patient to retain their optimism since it is a driver for improved health outcomes. For example - my bonusmom had bladder cancer and it had spread quite dramatically. We were TOLD it was spread to 3 small sites, "not a problem to treat" was also added. Driving with a sealed envelope of her med records and a disc of images to her next hospital, I ripped it open and found out the cancer was in FAR more than 3 "small" spots - closer to 9 - and they were not small at all, "untreatable" was marked in a note. UNTREATABLE. Later, when we heard she had 72 hours to live and it was in her brain, I was the only family member that knew docs had that information (in the brain) a week earlier and had withheld it.
      • Jul 27 2011: Hey Dave,
        Relating to the statement of what to hold back from a patient, would that have helped you in your quest to live if the docs had held back? Do/don't you feel that holding back would have literally killed you? Optimism with no truth behind it surely cant be labeled as such can it?
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      • Jul 27 2011: yes ! thats why we have to educate freshmen AND the what i regularly call "the sitting crew" as well.
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        Jul 27 2011: Nafissa, yes, that's what also said to Whitney and Sarah a minute ago. Generational transmission of old attitudes.

        This will take CULTURE CHANGE.
      • Jul 27 2011: I think that we forget that medicine evolved from an oral history and the difference today is that we write things down for anyone to readily access.

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