Society for Participatory Medicine
e-patients.net blog
others’ e-patient stories
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-patient stories, key people, medical records, news & gossip, others' e-patient stories, PM Tech, policy issues
When is patient data not patient data? When a patient wants his or her ICD data
The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one [...]
Read Moree-patient stories, found on the net, others' e-patient stories
A patient story: HIMSS’ Adam Bazer on IT from a patient’s perspective
From the HIMSS Blog, Adam Bazer with a personal health story where even in a great hospitals the IT is not as connected as can be. We wish your son Ari well, Adam! http://blog.himss.org/2012/06/25/healthcare-it-from-the-view-of-a-worried-father/ The link inside the post about another patient story with Jonathan Atler needs username/password for HIMSS virtual conference.
Read Moree-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 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 MoreJoPM, others' e-patient stories, positive patterns, pt/doc co-care, reforming hc
A physician who really understands patient-centered care
The Journal of Participatory Medicine has just published “The Patient Will See You Now,” a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues that the key to practicing patient-centered medicine is devoting time to listen to patients’ stories [...]
Read Moree-pts resources, general, medical records, others' e-patient stories
Kenneth S. Spriggs: The Benefits Of Visualizing Your Medical Data
Guest blogger Ken Spriggs talks about how he made sense of his medical data by creating a graphic electronic health record, the DIYEHR. [Update 11/25: the data visualization that Ken created is so extraordinary that we're adding it here, four days after the original post. LOOK how he helped his physicians "get" his medical history! [...]
Read Moregeneral, others' e-patient stories
Elaine Schattner: Don Berwick, Head of CMS, on the Value of Patient-Centered Care
Usually we talk about participatory medicine at the level of the individual care relationship, but increasingly we’re seeing the need to “Design and create a safe, decent, patient centered healthcare system.” And as we start to get real about that – concrete, tangible change– I’ve heard people wonder, “What do they mean by patient-centered?” Thanks [...]
Read Moreethics, general, others' e-patient stories, shared decision making
Kari Ulrich: Experienced from both sides of the bed
This guest post by Kari Ulrich, RN, originally appeared in a fibromuscular dysplasia e-patients’ blog. The November 2011 issue of Reader’s Digest reads in big, bold print, “50 Secrets Nurses Won’t Tell You.” Articles like this create fear and mistrust in the patient community.
Read Moree-patient stories, others' e-patient stories, Why PM
Next “doctor as e-patient”: Howard Luks, MD
We’ve sometimes written about doctors as e-patients. (There are a lot!) Here’s the next. SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what a lot of us do: “Then I headed onto a [...]
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