e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
The Future of Health: Robots, Enchanted Objects, and Networks
I have seen the future of health and it's networks (with apologies to Lincoln Steffens). Chronic disease is exploding in the U.S. The number of primary care health professionals is declining. Behavior change is difficult. But what are we going to do about it? Here are...
Connected Health: Patient networks panel
My research findings and their connection with real-life health care were given new life when I discussed them with Lisa Gualtieri, Josh Bernoff, Tim Edgar, and the audience at the Connected Health symposium. If you're intrigued, watch a video of the panel and look...
Who *are* those guys? (Matt Wiggins and Remedy Systems)
How many times have you been at a conference, listening to some panel, when all of a sudden someone says something that snaps you out of your stupor and you think, "Who *is* that guy?" (And if you're lucky enough to remember Butch Cassidy and the Sundance Kid, please...
AMIA board: “Hold harmless” clause in EMR contracts is unethical
Update the next afternoon: be sure to read the comments, with important updates as the conversation continues. Bulletin - I just learned about this tonight: Last Friday the board of the American Medical Informatics Association (AMIA) published a position paper in its...
