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.

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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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