Society for Participatory Medicine
e-patients.net blog
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general, others' e-patient stories, policy issues, pt/doc co-care, pts as teachers, shared decision making, trends & principles
Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient
Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one’s chances of [...]
Read Moree-pts resources, general, research issues, trends & principles
The FDA Patient Network Website – Patient-Centeredness that Walks the Walk
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the [...]
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Monthly Introduction to e-Patients.net
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here’s how to become a Society member, individual or corporate. Our publications: This blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible [...]
Read Moregeneral, key people, medical records, PM Tech, policy issues, pt/doc co-care, reforming hc
SPM Response to ONC RFI on Advancing Interoperability of EHRs and HIE
With the tireless help of Adrian Gropper, and the counsel of executive committee members Michael Millenson and Danny Sands who went above and beyond, and our President Sarah Krüg, the Society for Participatory Medicine’s Public Policy Committee completed a last-minute blitz and submitted comments in response to the Office of the National Coordinator for Health [...]
Read Moregeneral, PM Tech, reforming hc, shared decision making
The Black Box of You: Why the Quantified Self is so Frustrating Today
Imagine a black box. You can feed all sorts of information and data into it all the live long day. But the amount of data you can get out of it is limited. It just stares back at you with its blank, neutral sides. It can tell you things like where it was manufactured, or [...]
Read Moregeneral, net-friendly docs
Farewell (seven years ago today), Doc Tom
This morning on Facebook, an SPM member (who were you??) pointed out that it was seven years ago today that “Doc Tom” Ferguson, the visionary who foresaw the e-patient movement, passed away unexpectedly while being treated for multiple myeloma. Click the image (or this) to visit his site for more information, and just to say [...]
Read Moregeneral, policy issues, reforming hc
Who Are These Guys? Why the PCORI Picks Matter And a Lot More Than You Probably Realize
This guest post by Michael L. Millenson originally appeared on The Health Care Blog. Michael is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the Society for Participatory Medicine. The Patient-Centered Outcomes Research Institute has just [...]
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Monthly introduction to e-patients.net, blog of the Society for Participatory Medicine
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here’s how to become a Society member, individual or corporate. Our publications: This blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible [...]
Read Moreethics, general, policy issues, positive patterns, pts as teachers, research issues, Why PM
Partnering with patients – about patient centered RESEARCH METHODS
This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine, as the professions begin to understand the value [...]
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Regina Holliday: What I learned on the road to the Shortys
Cross-posted from Regina’s own blog. Please vote for her Shorty Award nomination by posting a Tweet here through Monday, Feb 18. She only needs about 80 votes to get into the top six finalists in #activism. I’m cross-posting this for two reasons. First, in this post she articulates, better than any I’ve seen, what drives an evangelist [...]
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