Society for Participatory Medicine
e-patients.net blog
pts as teachers
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 [...]
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A picture worth a thousand “What if health care..?” words
What if kids were given the support to participate in and understand their own health care? – @savingcase For more health care dreams, please see: What if health care…? (Storify) Or any of my other #whatifhc posts.
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Clinicians are from Mars, e-Patients are from Venus
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting [...]
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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“As She Lay Dying” – a son calls on the health system to involve patients and families in improving safety
Warning: this doesn’t end well. Not for anyone in the story. Unless it changes you, as it did me. Jonathan Welch, MD, teaches at Harvard Medical School and practices in the ER at Brigham and Women’s Hospital in Boston. But, as is often the case in life, the information that really matters is more personal: [...]
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PCORI Workshop post 3: Danny van Leeuwen (@HealthHats)
Next in our series of posts by SPM members on their experience at last weekend’s PCORI workshop. See Monday’s introductory post. I recently met (face to face) Danny van Leeuwen, one of the newer members of our society. He’s a sensitive, caring patient and RN, and one of the patient SPM members to attend last weekend’s [...]
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PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention)
Second in a series announced yesterday of posts by SPM members who attended last weekend’s PCORI workshop. This one’s from Kathy Day, an avid e-patient advocate from Maine. This originally appeared here on her blog, on Monday. Why PCORI made me endure flying through Frankenstorm I arrived home last night around midnight, after flying north to [...]
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PCORI Workshop post 1: Kelly Young (@RAWarrior)
As noted in today’s earlier post, we’re starting a series of posts by SPM members who participated in last weekend’s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest e-patients I’ve ever seen anywhere. Aside from her technical expertise (a superbly produced blog), and her administrative skill (creating the Rheumatoid Patient Foundation to address scientific [...]
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Beginning a series: SPM members’ thoughts on the PCORI workshop
All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________ This post started as a prolog to Kelly Young’s upcoming post, but at some point a prolog needs to stand [...]
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Neel Shah: Costs of Care Essay Contest 2012 for Patients and their Caregivers to Improve Healthcare Value
Guest blogger Neel Shah, MD is the Executive Director of Costs of Care and a chief resident in obstetrics and gynecology based at Harvard Medical School. As a presidential election looms and the American economy struggles to recover, the spiraling costs of healthcare have become a contentious political focal point without an obvious solution. Yet [...]
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