Society for Participatory Medicine
e-patients.net blog
pts as teachers
e-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, [...]
Read Moree-patient stories, end of life, general, patient networks, pts as teachers, understanding statistics
Tami Boehmer: Hope versus statistics
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement [...]
Read Morefound on the net, pts as teachers
Two Doctors Take a Patient-Centric Approach in New Books (NYTimes)
Today’s New York Times has a review of two new books, Doctors with Plenty of Time for Patients. Reviewer Abigail Zuger MD says “Suppose … you could actually rent the doctor’s attention for as long as you needed it?” In these books two doctor take plenty of time to explain things to patients. The first [...]
Read Moree-patient stories, hc's problem list, pts as teachers, Why PM
Powerful new “Doctor becomes an e-patient” story in Journal of Participatory Medicine
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.” A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the [...]
Read Morepatient networks, pts as teachers, trends & principles
NPR’s Talk of the Nation: Patients Seek Moral and Medical Support Online
Yesterday (March 3), NPR’s popular program “Talk of the Nation” covered something we discuss often: how e-patients find information and find each other, online. Featured guests were Pat Furlong, mother of two boys with a rare disease, who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent [...]
Read Morepts as teachers
“The Spoon Theory”: brilliant description of chronic illness
If you don’t truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In 5 minutes it forever changed my own awareness of my wife’s arthritis and bone pain. On Twitter I saw “spoonies” raving about this months ago but I finally took [...]
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