Society for Participatory Medicine
e-patients.net blog
Health Care Decisions
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Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on [...]
Read Moremedical records, policy issues, reforming hc
Health IT Policy: E-patients want access
What would you say to policymakers who are discussing the implementation of a national health information infrastructure? Here’s what I’d say: E-patients want access to tools and information. Many will find what they need, many will not. You can help.
Read Moree-patient stories, others' e-patient stories
E-patient Interview: Keith Schorsch
When Keith Schorsch began suffering from facial paralysis, fatigue, and severe muscular and skeletal pain, eleven doctors failed to identify the cause. Luckily, a friend recognized the symptoms as similar to what she had suffered when she had Lyme disease – and that’s the clue that saved Keith. Keith turned his experience into a consumer [...]
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E-patient Interview: Sheryl Stein
Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit [...]
Read Moree-patient stories, others' e-patient stories
E-patient Interview: Amy Tenderich
Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.” Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions [...]
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E-patient Interview: Stirrup Queen
Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT [...]
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