e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Salzburg Global Seminar, December 2010: Informing and Involving Patients in Medical Decision Making
All, if you have a story where you were affected by being involved (or not) in a medical decision, please see my request at "Help Me Represent You" below. Same if you have points you want me to bring to this seminar’s attention. I feel extremely fortunate to be...
Going Viral Against HIV and STIs
The New York State Department of Health AIDS Institute, in partnership with AIDS.gov, held a one-day forum on social media, HIV, and sexually transmitted infections (STI) that turned out to be an unfiltered discussion of love, truth, and technology. Why was it so...
“Consent to Hoard” and other news from #IHI
I'm at the annual IHI Forum in Orlando, in an all-day workshop (class photo at left) titled "Whose Care Is It, Anyway ... and Can Health IT Help?" Laura Adams of the Rhode Island Quality Institute was just talking about the social obstacles to data mobility - doctors...
Fools! Damn fools! And Medical Science. (Right, Santa??)
(To help you visualize the scene, see the famous Coca-Cola Santa image. Now imagine Peter Frishauf asking Santa for that train set!) Dear Santa, I always believed in you Santa. All those kids who said it wasn’t true, you weren’t real, well guess what: I knew you were....
Will patients be involved in Patient-Centered Outcomes research?
A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today's guest post shows, he's now actively engaged in thinking about...
“I’m getting impatient”: an empowered patient guest post
Social media brings unexpected connections, which lets us combine thoughts and forces. This summer we connected with "Rheumatoid Arthritis Warrior" Kelly Young (see her great post here, Learning to use my mother-of-a-patient voice), which led to being found by Cynthia...
President’s Cancer Panel: Input, Please
What evidence would you bring to convince cancer researchers and policy makers to pay attention to how the internet is changing health and health care? That's my challenge for the Dec. 14 meeting of the President's Cancer Panel, "The Future of Cancer Research:...
A live case study in patient engagement and participatory thinking
Ted Eytan drew our attention to a real-time example of participatory thinking, in the case of his friend Matt, an engineer who's recently been diagnosed with MS. His post This is what $8,000 worth of drugs looks like tells the story, including videos of two doctor's...
“Equity & Excellence: Liberating the NHS” (UK white paper)
I'm preparing to participate next month in a seminar on shared decision making, and some homework led me to this government paper, published in July: Equity & Excellence: Liberating the NHS (PDF, 339k). I must not have been paying attention to my UK friends on...
Avoiding harm in the hospital
I spoke recently at a summit organized by Consumers Union's Safe Patient Project, and learned in detail about the persistence and prevalence of hospital-acquired infections and other safety risks. Hospitals are not as safe as they should and could be, and hospital...
Engage With Grace Over Thanksgiving
Can you and your loved ones answer 5 questions about the end of life? Alex Drane, founder of Engage With Grace, explains why Thanksgiving is a good time to talk about these issues: If you have thoughts to share about Engage With Grace, end-of-life decisions, or...
What’s the point of Health 2.0? (Some answers this time)
What's the point of all this technology if it doesn't motivate behavior change? That's what we debated almost a year ago and now I'd like to bring up the same question, but with a few more examples. If you have time, I highly recommend watching this video (and not...
