Medpedia – where are the patients??

Medpedia has gotten a lot of publicity in the past week. Considering that Wikipedia has disavowed* usefulness for patients, Medpedia sounds like a potentially great idea. * See Jon’s correction in Comments. –EPD

But when I saw their home page it literally took my breath away: there are invitations for doctors to join, and organizations to contribute content, but nothing for patients – we can contribute ideas, not content.

Well, I clicked the Contribute Ideas link, and you bet I submitted an idea:

Subject: Accept input from patients about what works

As I’ve said repeatedly in my blogging, all the most valuable information I got during my near-fatal cancer episode in 2007 came from my peer group – other patients with my cancer. I’m astounded that your home page invites participation by everyone BUT patients, except as providers of feedback. Will you please consider that we have something of value to say, and give us a role too, as *contributors*?

I can give you specifics of the gaping flaws I encountered in the non-patient resources I used, if you want.

Here’s the thing about patients vs observers, even the most knowledgeable observers: Until you have had your @$$ on the line, such that you’re really depending on the usefulness of answers you get from a source, you don’t really know your @$$ from a hole in the ground regarding where to find useful information. You need a reality check from street level: “Hey, how’s it going? Are we on track? Is it working for you?”

If anyone from the established medical reference sites had asked me that last year, it would have been a resounding no, with details.

Here in April, John Grohol wrote about the Wikipedia disavowal, and Gilles Frydman (founder of the peer network that was my best resource) commented:

“No wonder e-patients have learned to trust their peers, because so far their exchanges have retained the right balance between a high level of freedom and a good amount of constant monitoring and peer-challenge when some information sounds off-track.”

Amen.

Medpedia, please open your doors to substantial patient contributions.

========

I anticipate that someone will respond with this, from the FAQ page:

Who can contribute to the content on Medpedia?

Anyone. There are multiple ways of contributing. If you are an MD or PhD in the biomedical field, you can apply to become an Editor and make changes directly to Medpedia articles (See more below). If you are anyone else, you can use the “Make a suggestion” link at the top of any page to make a suggestion for that page. An approved Editor will review and potentially add your suggestion.

Please see my observations above about reliability of information at ground level. It is an error to think that only approved medical professionals can say what information is useful. That’s the whole point.

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Posted in: e-pts resources | pts as teachers | reforming hc | trends & principles

 

 

Comments

4 Responses to “Medpedia – where are the patients??”

  1. I’ve received a heartening response from Andrea Spillmann of MedPedia. Here’s my follow-on response to her.
    ——
    Thanks for the acknowledgement. I *most* sincerely hope you’ll think this through. As I said, I can give you specifics of the gaping flaws I encountered. Those who put together information for publication run the risk of unwittingly missing the mark if they don’t close the loop by asking “end users” (patients, in this case) how it worked out.

    Honestly, during my cancer episode last year, all the information I found on well respected web sites (and I do respect them – I’m trained as an engineer) was out of date, seriously so. And when I attended a kidney cancer conference last fall, the same out of date information was still presented – because it’s the most recent peer-reviewed data. BUT IT WAS NOT RELEVANT ANYMORE, because the entire study (the Kansas City Kidney Cancer Database) was compiled before any of today’s treatments existed.

    And that’s not just me saying that; I asked the speaker about it in the public forum, and he agreed, quite openly. I can provide contact specifics if you like.

    I hope I’m being clear in my communication – it’s really important to me that I convey this point. Today information changes so rapidly that the peer review process cannot keep up, and established means of publication can be seriously out of date. What really works is to have a “Consumer Reports” sort of process, in which the patients share their actual experiences.

    Just one example of this, quite current and quite relevant, is what happened with the Wellbutrin generic problem, which the FDA finally saw was a problem (coverage in the Wall Street Journal and on this blog after patients reported the issue, though conventional reporting channels hadn’t worked.

    I do hope you’ll provide a forum for patients to express their experiences. I don’t pretend to be a doctor and I’m eternally grateful for my oncologists’ ability to keep me alive. But I do assert that I’m vigilant and responsible about what information is accurate and what is stale.

    Thank you again for acknowledging my message – I sincerely appreciate it. Everything starts with dialog.

  2. Dave, I don’t agree with your comments about Wikipedia’s “disavowal” of patients if it’s based on the conversations Gilles and I had with the editors there, which resulted in John G’s post. You seem to forget that the editors ultimately let the link to ACOR stand after I put it back. Gilles won the argument, we made our point.

    The Wikipedia guideline we encountered makes sense in general. It’s not anti-patient. The gist of it is that forums – conversational environments – are generally not authoritative sources of information, so the guideline is that Wikipedia doesn’t accept those links. The editors in the conversation didn’t understand what ACOR represented, and one editor in particular was somewhat resistant. But ultimately we made our point.

    I see this as a minor rumble, insufficient to support a case for Wikipedia’s disavowal of the patient perspective. You may know of other issues? Otherwise I suggest that we stop feeding the assumption that there are these flaws within Wikipedia, which overall tends to be pretty reasonable in mediating and managing contributions of knowledge. Try contributing your perspective to Brittanica and see whether you can get a sustained discussion with an editor re acceptance or rejection.

    As for Medpedia – unlike Wikipedia, it’s not an open wiki. You have to have credentials to post. It makes sense to me that they would filter input from “patients” lacking any other credentials, based on the kind of system they’re trying to build. However I suspect they would welcome input from credentialed members of this group (and other patient groups), so they’re not totally excluding this perspective.

    Why wouldn’t Medpedia, or any similar site, be totally open? I thought about this sort of thing recently when I was taking a round of Cipro and researching its side effects. I found patient conversations that were filled with fearful speculations and misinformation. Many seemed to be building cases for lawsuits against Bayer alleging damage by the drug. We here have seen and emphasized the positive side of patient collaboration and conversation and we’re promoting patient participation, but should acknowledge that there are patient conversations that are not necessarily accurate, productive, or helpful. I personally understand and wouldn’t oppose Medpedia’s plan of filtering citizen input through an editorial process.

  3. Great input, Jon. I’ve annotated the main post to direct people to your correction here.

    Never let it be said that any random empowered citizen is always right. :)

  4. Ted Eytan says:

    Dave,

    I sympathize with your feelings, which I see in the big picture as a question of, “how will the future medical database(s) that health professionals use to care for me include patient experience?” rather than “Is Wiki/Medi/Knolipedia doing the right thing?” We could argue about the value of the pedias out there, but we wouldn’t really argue about the value of the patient voice, would we?

    Maybe these products won’t be able to connect health professionals to the patient experience, perhaps the next one will (and you will be a part of its creation)?

    It might have been helpful to me in medical school to be learning about a disease state, and then to be able to click on a video of a patient explaining what it’s like for them to be managing it. Maybe that sort of thing is possible to create, now? Or do you think there’s a better pedia out there that you’d create to help health professions be better care providers?

    Physicians in training, many of whom are too young to have much life experience with illness of their own, shouldn’t have to wait years to realize that their patients are ready, willing, and able to teach them to be better for the next patient.

    Thanks for keeping the conversation going,

    Ted

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