Society for Participatory Medicine
e-patients.net blog
pts as teachers
e-patient stories, end of life, others' e-patient stories, pts as teachers
HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows
Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ [...]
Read Moree-pts resources, pts as teachers
#firstMRI is a project! Tweetchat tonight
Update 3/23: here’s the transcript of the event. Remember December’s post about the #firstMRI idea, to help poor unsuspecting patients prepare for the “monkeys banging on garbage cans” experience? It’s a project now! Join us for tonight’s #s4pm tweetchat at 8 ET / 5 PT! http://tweetchat.com/room/s4pm (Background info is at bottom here.) Topics: T1: Bad [...]
Read Morepolicy issues, pts as teachers, reforming hc
Regina Holliday’s testimony at NCVHS
SPM member Regina Holliday is known for her “Walking Gallery” of painted jackets, each telling one person’s healthcare story, which she relates in an accompanying post on her blog. On Tuesday she became the latest e-patient to testify at a meeting of NCVHS, the National Committee on Vital & Health Statistics. The slides she presented [...]
Read Morefound on the net, JoPM, others' e-patient stories, positive patterns, pts as teachers
Rheumatoid e-Patients Share the Spotlight at Medical Conferences
The Journal of Participatory Medicine has published a narrative by Kelly Young entitled “Present, Patient, and Accounted for: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology.” Young describes how the Rheumatoid Patient Foundation evolved from her and other e-patients’ efforts to better understand their condition through online research [...]
Read Moregeneral, patient networks, pt/doc co-care, pts as teachers, reforming hc
An e-patient issues an RFP, saying what’s important to him
It’s funny how things turn out sometimes. Lately I’ve written a lot here about e-patients taking an active role at a new level in healthcare, not just engaging in their care, but actually defining what it should be. Well, wouldn’t you know it, life has provided me with a case study – myself. Last week [...]
Read Moree-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 Moremedical records, practice variation, pts as teachers, reforming hc, shared decision making, Why PM
HBR blog: “The trouble with treating patients as consumers”
Edited a few minutes after the original post. Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can. (As I compiled the paste-ins for this post, I was struck again [...]
Read Morept/doc co-care, pts as teachers, shared decision making, Why PM
Action in the face of uncertainty
Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction. Sometimes I hear of patients who believe their physicians dissed a proposed or experimental [...]
Read Moree-patient stories, general, hc's problem list, pts as teachers, reforming hc, Why PM
“When I became a patient, I felt my identity slipping away.”
Participatory medicine requires an empowered partnership, in which patients express their wants and pursue their goals in partnership with providers who hear them and work together. And that’s not just about the biology. In this powerful narrative, a hospital executive becomes a patient, sees what it’s like to be stripped of everything and not heard, [...]
Read Moregeneral, others' e-patient stories, pts as teachers
Neel Shah: Using bedside stories to unmuddy the waters
Guest blogger Dr. Neel Shah is the Executive Director of www.CostsOfCare.org and a senior resident in the Massachusetts General Hospital-Brigham & Women’s Hospital combined residency in Obstetrics and Gynecology. Last year, the nonprofit that I direct launched an unusual essay contest — we asked doctors and other care providers to tell us about their mistakes, [...]
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