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Mobile, Social Health at the National Library of Medicine

Update: The NLM released new widgets on July 14, along with a redesigned MedlinePlus site. (Read @eagledawg’s take on these new tools, as well as her response to this post.) Speaking to the senior staff of the National Library of Medicine last week was like...

Patients Like Me beats Lancet Neurology by a mile

Patient networks for the win! MIT Technology Review: “Earlier this month, the journal Lancet Neurology published a study showing that the generic drug lithium did nothing to slow the course of ALS … Eighteen months earlier, PatientsLikeMe, a for-profit...

A Patient-Centric Definition of Participatory Medicine

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. This new definition devised by the board of the Society of...

#FDASM: + ca change, + c’est la meme chose

The FDA is holding a public hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” There is a tremendous amount of buzz on Twitter and blogs about this meeting which will hear 60 speakers, some more than...

Why Participatory Medicine?

For most people, their impetus to be actively engaged in healthcare comes from an experience with serious illness—either their own or a loved one’s. My journey into participatory medicine began during my internal medicine residency at Boston City Hospital, a public...

Social Media’s Promise for Public Health

Federal agencies can, and should, be the first responders to health questions. Social media can help. That’s my summary of presentations from last week’s National Conference on Health Communication, Marketing and Media conference, where I had the sense,...

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...

Imagine someone had been managing your data: next anecdote

Next anecdote about poorly managed medical data: Amen! Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was...

A wonderful story of participatory medicine

Amy Marcus, in today’s WSJ,  wrote a powerful article about a mom moving medical mountains to help her twin daughters survive a rare and deadly disease. Entitled “A Mom Brokers Treatment for Her Twins’ Fatal Illness. Bucking Scientific Convention,...

I Am “A Nobody & A Nothing” & I’m Proud Of It!

In our continuous series about undeclared conflicts of interest comes a great blog post from the Wall Street Journal. In it JAMA’s editor in chief, Catherine DeAngelis, M.D, interviewed about a certain Jonathan Leo, had these choice words to describe him:...

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...

The Plausible Promise of Participatory Medicine

I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence. Reforming health care is too big for most people to grasp; creating spaces for participatory medicine...

Prevention is the Best Investment

David Brown over at the Washington Post wrote an article yesterday noting that prevention isn’t necessarily cheaper than “doing nothing” and letting people get sick. Well, “Duh,” I say. Prevention is an intervention, it’s just an...

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