Participatory Medicine- the E-patient revolution

June 18, 2010Carole 3 Comments »

I am one of those annoying patients who wants to know what her numbers are on the lab test, not just that the result is negative. How negative? What’s the normal range? Can I have a copy of the test?

My doctor’s reaction to my questions either kept me in their care or pushed me out the door. I am terribly impatient with the paternalistic physician who knows just what’s best for me without me being involved. I have annoyed many of my doctors by asking “too many” questions and wanting to know “too much”.

I know that not everyone feels like me. I know patients who would rather not watch the health care sausage being made. That’s perfectly okay, it’s all about choices that fit you. But I write this blog for patients like me who want to know and want to be part of  the decisions that are made about their life. My purpose is not to give medical advice–I am not licensed to do that!, but instead point you to sites of medical information that will give you a good background to make your own medical decisions with your doctor. Sort of like an internet librarian…

My earliest foray into patient education was short-lived. Although initially approved, my distribution of March of Dimes patient handouts on the risks of multiple gestation was quickly discontinued after two weeks because “patients asked too many questions”. I am unrepentant, however, and created this blog.

Today I was thrilled to find the Society for Participatory Medicine , an organization for patients and physicians (bless their radical hearts) who share the belief that educating patients and letting them participate in their own health care is a good thing. This may seem like common sense, but is apparently still a radical concept in some circles.

To those of you interested in the history of health care, here’s a startling fact.  Letting a patient see their medical record was only possible through litigation in 41 states in 1973!! Read the full blog about “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded” if you’re interested.

E-patients.net is a fascinating blog devoted to participatory medicine. The groups white paper summarizes the increasing  power of participatory medicine to create better outcomes for patients. It also contains powerful personal stories of patients who took their own healthcare into their hands and basically, saved themselves. As doctors get busier and healthcare gets more automated, we have to get more pro-active and speak up for ourselves to make sure we get the best healthcare we can get.

Melissa Ford, author of the Stirrup Queens and Sperm Palace Jesters blog, was interviewed in 2008 for epatients.net. She discussed her own journey to becoming a well-informed e-patient. Sometimes you have to be truly pissed off to push back against a health care system that can make you feel like you are gumming up the machine (and maybe jeopardizing your care) by asking too many questions. She makes an interesting point that the next step may be to take discussions out of the fertility community and communicate with the general public about fertility concerns, to counteract the media hype about the hysterical IVF patient – think Octomom.

There are some signs that the tide is turning and more physicians may be getting on board with the whole education thing and not just for self- advertising purposes. There is interest in performing research on how internet-delivered healthcare can change the patient physician relationship. The American Board of Specialists have created some patient advice on “How to Be a Smart Patient”, suggesting that patients validate their doctor’s credentials and  be skeptical consumers of website information.

Future posts will offer more patient tools type of topics but for those of you who might have an academic interest or activist leanings regarding healthcare delivery (or consumption) , I hope you find this post liberating. 🙂

© 2010, Carole. All rights reserved.

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