Society for Participatory Medicine
e-patients.net blog
patientslikeme
general, trends & principles
Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.
Here’s my simple definition of peer-to-peer healthcare: Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible. An idea whose time [...]
Read Morepatient networks
Healthcare Out Loud
Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what [...]
Read Moreshared decision making, Why PM
“They never took his sock off”: a parable of patient empowerment, resourcefulness, and literacy
Jessie Gruman’s Journal of Participatory Medicine commentary, “Evidence That Engagement Does Make a Difference,” reminded me of a talk delivered by Alice Tolbert Coombs, M.D., last September: As you listen to Dr. Coombs’s chilling story about a man who lost his foot because nobody ever took his sock off to examine it, please review Jessie’s [...]
Read Morepolicy issues, pts as teachers, research issues
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: Accelerating Scientific Innovation” (PDF of the agenda).
Read Morepatient networks
Patient Communities: Which Way Forward?
If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the [...]
Read Moree-pts resources, patient networks
Patient Communities… at Walgreens?
In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.” I talked about the social life of health information and the internet’s power to connect people with information and with each other. Living with chronic disease is associated with being offline – no surprise. [...]
Read Morepatient networks, policy issues
A New Conversation About Health Privacy: Who’s In?
Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care.
Read Morepatient networks, policy issues, positive patterns
The Decision Tree: How Better Health Can Scale
“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to [...]
Read Moredemographics, trends & principles
Health 2.0 Europe: A Moveable Feast
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, [...]
Read Morepatient networks
Privacy can kill, openness can heal
If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox: I prefer to turn the question [...]
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