Society for Participatory Medicine
e-patients.net blog
others’ e-patient stories
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 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 [...]
Read Moreend of life, general, key people, news & gossip, others' e-patient stories
Steve Jobs’ Cancer Denial
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [...]
Read Moreend of life, found on the net, general, JoPM, others' e-patient stories, patient networks, social media
The unexpected power of storytelling
The Journal of Participatory Medicine recently published a new commentary, “A Skydiver Jumps, and an Online Community Exults,” about the unexpected power of storytelling in a lung cancer support group. After sharing an uplifting story with her online group, Patricia Flowers is surprised to learn how it moved and inspired her fellow members. This article [...]
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, [...]
Read More
