Health Geek Tip: Abstracts are ads. Read full studies when you can.
Ivan Oransky, executive editor of Reuters Health, provided excellent evidence yesterday regarding the need to look past abstracts of journal articles if accuracy matters to you: Read more
Our Bodies Ourselves: support this pioneer of empowered, participatory healthcare
Some people think e-patient ideas are new. They’re not. I’d like to give credit to a noble antecedent, and ask for your support.
Shortly after I discovered this blog (February ‘08) I recognized two strong precedents from earlier in my life: Dr. Benjamin Spock’s Baby Book (opening words: “Trust yourself. You know more than you think you do,”) and Our Bodies, Ourselves.
Dr. Spock was published a few years before me. Our Bodies, Ourselves came along a year after I graduated college.
About its origins, Wikipedia says:
#WhyPM?
Note: if you do not use Twitter an explanation of this post’s title may be in order. #WhyPM is the Twitter hashtag we have been using collectively to announce the launch of the Journal of Participatory Medicine and to mention topics of interest from the Journal and the Internet.
So what is Participatory Medicine?
Simply put “Participatory Medicine (PM) is a model of medical care acknowledging the central role of the e-patients in medicine and requiring their active participation and engagement, because health professionals can no longer do it alone.”
As we put the finishing touches to the Journal of Participatory Medicine, it is ever clearer that various stakeholders have different views of what constitute participatory medicine. In particular, our different backgrounds are shaping how far we accept the central role of the engaged and networked patient in the brave new world of PM.
Using various social media, I have tried to iteratively refine the initial definition crafted in Feb 2008. The Wikipedia definition remains the single most quoted definition, but I have come to believe we should provide the much simpler one, above. As Alan Greene, MD commented in the crowdsourced definition of PM: “The ‘participation’ in Participatory Medicine isn’t just a patient participating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.”
Call for Submissions: Grand Rounds next week is on Participatory Medicine
We have wonderful news: next week Grand Rounds is devoted to Participatory Medicine. We are asking for your personal stories of how patient engagement has worked for you.
It’s being hosted by Robin, the incredible patient who runs the Survive The Journey blog. She’s a member of the Society for Participatory Medicine (are you? Join) and she’s one heck of an e-patient: empowered and engaged in her own care, with a vigorous community around her.
For those who don’t know, here’s what the Grand Rounds “blog carnival” is about. Medical professionals, bear with us while patients learn. And of course, correct any errors: Read more
e-Patients: a high tech group wants our input (gasp!) on connected health. DO IT!
I’m not making this up; it’s a wonderful thing. MassMEDIC, the Massachusetts Medical Device Industry Council, is looking at the future of “connected health” devices. They’ve got a survey that’s been given to all kinds of industry and policy people, and now, blow me down, they want patients to take the survey too.
DO IT! Go get your friends. Let’s make this invitation rewarding to the industry people who invited us.
The link to the survey is at bottom. But first, if you’re not up on what connected health is, get informed. Here’s a start.
Shared Kismet: Wikipedia and the NIH
The National Institutes of Health hosted a Wikipedia Academy today to train scientists, communications staff, and other NIH staffers in how to contribute to what has become a top source for health information in the U.S.
(For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.)
The NIH communications team invited me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the first time. Read more
Participatory Medicine: What Is It For You?
As the meme is now firmly accepted, I thought we ought to have another round of definition crowdsourcing.
If you use the term please stop here for a minute and let us know what it means to you.
I will summarize the responses and use the results to update the wikipedia page on Participatory Medicine.
Thank You!
Wikipedia as an e-patient source
Read this quote and think about which industry is being admonished:
“We cannot, however, continue to reject Wikipedia because we aren’t comfortable with the wiki process itself… To be quite frank, continually bad-mouthing Wikipedia to the very people who use it—successfully—makes us look a bit daft. It would be much more productive to teach [people] how to best use Wikipedia.”
I excised “colleagues, students, and parents” from the quote since I think you could swap in “patients,” “customers,” or “voters” just as easily.
Read the whole column by Chris Harris in the School Library Journal for more on how Wikipedia actually resembles the early days of the Oxford English Dictionary.
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