Society for Participatory Medicine
e-patients.net blog
ACOR
e-patient stories, patient networks, pts as teachers, social media
Helen Palmquist: Supporting my cyber-sisters with words of hope
Guest blogger Helen Palmquist is a member of the Ovarian Cancer National Alliance support community, hosted by Inspire. She lives in suburban Chicago. I was diagnosed with ovarian cancer at age 41, in the pre-Web days of 1987. From my hospital bed after my first surgery, I phoned two people whom I had heard were [...]
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 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).
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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 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, [...]
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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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Superheroes and rock stars at the Institute of Medicine
Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent [...]
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e-Patients Are Proud Deviants!
The wonderful Atul Gawande delivered this past Friday a commencement address, titled “Money,” to the graduates of the University of Chicago Pritzker School of Medicine. He touched on and expanded on the theme of his groundbreaking article “The Cost Conundrum” that was reviewed on this site. The transcript of the commencement address is definitely worth reading because [...]
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Stress: the New Normal for Cancer Patients?
Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay: I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the [...]
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