Epatient Experts

September 30th, 2010 by DCPatient Leave a reply »

Having spent the past week participating in a workshop for FDA patient representatives which included sessions on safety analysis and pharmacokinetics, giving a presentation on ways that e-patients can advance clinical research at the American Academy for the Advancement of Science, and being inspired by the E-Patient Connections conference in Philadelphia, I admit to being a bit tweaked at being told in ENT surgeon, Martin Young’s blog post “Are E-patients Experts in Their Own Diseases?” that I have no expertise to offer.  I agree with the central point, particularly after a long conversation with my physician-husband, that patient bloggers should not make definitive recommendations about individual treatments for individual patients, but would be better off couching their remarks as based on whatever experience they have and instead offering key questions to raise or processing for evaluating options.  However, I’d like to make two points (1) the case for e-patient expertise and (2) why patients turn to e-patient bloggers in the 1st place.

The case for e-patient expertise.

Not all patients who go online are e-patients or purport to be experts in any form or fashion.  They are simply seeking information to help them make sense of some health issue intruding into their everyday lives.  There is a burgeoning cohort of patients, however, who not only manage their own conditions in great detail, but read scientific journals, attend medical conferences, and online and off interact with hundreds if not thousands of patients (and often physicians).  Wego Health does a great job of describing the depth and breadth of experience of this small percentage of health activists.  To dismiss this group as simply being experts on themselves is shortsighted.  They may not have the clinical expertise of a top physician thoughtleader but they have a range of insights and expertise in the disease state, in the field,  and are often more well-rounded and informed than an average MD in one practice setting.   I’d love the opportunity for CPE – continuing patient education – alongside CME.  While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.

Why patients turn to e-patient bloggers in the 1st place

I think we can all agree that the ideal scenario is for patients is to have a relationship with a highly-knowledgeable physician, or team of physicians who work collaboratively, who has the time to respectfully listen to all of our concerns and issues, ask probing questions, conduct comprehensive exams, order the right tests, and feed back the diagnostic information in terms we can understand, in concepts we can buy into, and translate into treatment plans that work with our lifestyles and values. Few patients have that.  Not all of us can have @DrDannySands or @tedeytan as our physicians, unfortunately. Nor does the current healthcare “system” support physicians who would love to practice this way.

Too many patients feel rushed, dismissed, patronized, and confused.  They return home asking themselves, “what did that mean?” and “what do I do next?”  Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion.  That’s when the online search begins for clinical definitions, symptoms, treatment options, but more importantly someone to help make sense of it all and help a patient figure out what all this information can mean for them and their lives.  E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal.  Doctors you created this gap. I’d be happy to lay not my laptop if you would fill it.

Excellent posts on the subect by @RAwarrior
http://hjluks.posterous.com/healthcare-and-social-media-are-e-patients-cr

http://rawarrior.com/epatients-role-in-healthcare-social-media-do-doctors-hate-blogs/

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7 comments

  1. Phil Baumann says:

    Very sharp points you’re making here – kind of goes right into the heart of the matter.

    At #epatcon, I spent time asking people basically: “so, how *do* we get physicians into this discussion?”

    Some of the answers were that we third-parties would help to nudge them on. I think that’s somewhat true, but I can’t imagine that would be strong enough of an influence.

    I think we need a simple way to bring physicians to a platform where they can not only discuss this among each other, but also with the public at large in a relaxed ambient setting.

    Dare I suggest Twitter for this?

    I say we take a stab at it, and start using #MDchat for that – to take advantage of the times we live: http://MDchat.org

    Enjoyed the conference & chatting with you! Hope we see good outcomes from it!

    @PhilBaumann
    Phil Baumann´s last blog post ..Interview at epatcon- Connecting Patients with Physicians- EMRs and EHRs

    • Kelly Young says:

      Phil, Of course I’m in favor of docs on Twitter & I’ve even done quite a bit of connecting & supporting of ones that I know over the last year. Can I ask about #MDchat? I’ve seen Tweets saying “Docs Rule!” What does that mean? Is it just a rally cry to join in, I hope?
      Kelly Young´s last blog post ..What Can We Do About the Rheumatoid Arthritis Awareness Problem

      • Phil Baumann says:

        Sure, I’d be happy to: – MDchat is building on RNchat, which so far has been a great way for nurses to connect, share their ideas and discuss the things that matter to them and their patients.

        “Docs Rule” was just a bit of humor (there’s a saying that goes “Nurses Rule” (which, as an RN, I won’t argue against 😉 – Everybody “rules” in their own way 🙂

        I see Twitter as a gateway for people to come up to speed on emerging media. There are some excellent docs on Twitter – @KentBottles, @Doctor_V, @Dermdoc, @hjluks and many many others.

        I’m hoping we see more physicians get into this staple of contemporary communication – not from the marketing angle (nothing wrong with that btw), but from a more general perspective of: “let’s get together and thrash out ideas, opinions, etc.”

        Can’t know, unless and until ya try. It’s a wide open-sourced option to stimulate discussion and connect diverse professionals not only within the medical profession, but around it.
        Phil Baumann´s last blog post ..Interview at epatcon- Connecting Patients with Physicians- EMRs and EHRs

  2. Kelly Young says:

    Wow, Donna.

    I loved this conclusion: “E-patient bloggers and online forums are viewed as credible sources for patients because they are psychologically safe places, patients can control the timing of the interaction, and because the information presented is relevant and personal.” It’s the plain truth that is not going to change any time soon.

    There is much talk about how companies can join in, but patient bloggers are uniquely able to fill this role. Doctors & corporations & government will have to accept the fact, I believe, if they truly want to participate in what the patients are doing online. Genie (of valuable human connections) is out of the bottle.
    Kelly Young´s last blog post ..What Can We Do About the Rheumatoid Arthritis Awareness Problem

  3. @kgapo says:

    Hi Donna,
    I have noticed Martin Young’s post at noon, I have RTed & was ennoyed by his comments… Patients do not claim to become docs in the place of docs, but some of them do know enough about their condition to be able to discuss on an equal foot with their physician.

    As your rightly point out in your first sentence many of us have complemented our health literacy through conferences, meetings, committees, etc. of course on our given topic and we may say that we know not everything but a considerable amount of what is current.

    I endorse your suggestion for “the opportunity for CPE – continuing patient education – alongside CME. While the usual patient education brochures are great (I’ve even written some) as patients advance in their sophistication many of us would appreciate a level of education more akin to our physicians but with slightly less jargon and some support on the biostatistics.”

    Needless to mention how many times friends call me after a medical appointment to discuss what the doc said and get my insight on what the doc meant. Why? Because the doctor has too many appointments of 10-15min. max. to manae and feels in a hurry. The same situation is usual in both public and private medical practices and clinics.

    You correctly mention “Too many patients feel rushed, dismissed, patronized, and confused. They return home asking themselves, “what did that mean?” and “what do I do next?” Good luck trying to communicate with your doctor or the doctor’s office by phone or email to get real answers at the time and in the setting where are comfortable and truly prepared to have the discussion.

    If doctors feel that expert patients are gaining in credibility, I would say that they should ask themselves why? How can they restore the patient’s trust to his doctor? I think that the root of trust is that old time doctors had time to physically examine the patient and listen to him, something that becomes rare today, when the doctor sees only scans and biostatistics and writes a prescription with written instructions and the appointment is finished…

    Kathi Apostolidis
    Breast Cancer & Patient Rights Advocate

  4. DCPatient says:

    Thank you all for the comments and support.
    I hope that #MDchat is a huge success. I hunger for physician insights on how to improve healthcare for all involved. E-patients aren’t trying to replace doctors, we just want to be respected for what we bring to the table.

  5. Martin Young says:

    Sound comments, all, and I take note. But if you read my posts carefully you will see I make allowances for the points you make. I also make a distinction between having ‘expertise’ and being an ‘expert.’

    Perhaps we could agree that there are two levels of expertise that need to be acknowledged – that of patient and doctor?

    The folk who contribute here, some of whom I have come to know and respect, are the exceptions and not the rules to the ‘informed’ patient. I see many shocking examples of the latter.

    Donna, I have an iniative at http://www.consentcare.net that aims fir a lot of what you ask!