e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
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...
BMJ commentary: “Enlist the patients’ help”
Tessa Richards, assistant editor at the British Medical Journal, has posted a well reasoned commentary on the BMJ site, "Enlist the patients' help." I'm no expert on the UN's work here but what we seem to be seeing is, once again, paternalism: "We who know all...
Guest post: Overcoming “battle fatigue” in an online support community
Another post from the Inspire.com network of patient commuÂniÂties. This one's from New Hampshire resident Linnea Duff, an active Inspire participant who has Stage IV NSCLC (non-small-cell lung cancer). She blogs at Life And Breath. It's often been said that different...
The Green Button idea in practice
E-Patient Dave's post about the Green Button idea generated a lively and substantive discussion in the Comments section. The idea of making it easy for patients to anonymously share their data online for the benefit of research is apparently one whose time has come....
Do You Know What FDA Approval of a Drug Means?
Continuing the thread of the difficulty of making good decisions about prescription drugs: It appears that many of us think that FDA approval of a drug means safer and better...Not so fast:...
Case Study on ‘Autonomy in Jeopardy’ for Mental Health Patients
The Journal of Participatory Medicine has published a new case study entitled "Autonomy in Jeopardy: Contrasting Participatory Health Models with Patient Decision Making Under Mental Health Law." The authors examine the problem of how to achieve patient participation...
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...
Doctor Pay Too High?
I just received this press release and suspect the original study will get a fair amount of attention. While the original research article in Health Affairs requires a subscription, the press release tells most of the story. I encourage our readers to have a look at...
ONC’s new Query Health initiative – what’s in it for e-Patients?
This is a guest post by SPM member John Sharp, Manager of Research Informatics at the Cleveland Clinic. John gets it about how information empowers healthcare and e-patients. I first met him at Medicine 2.0 in Toronto, 2009, after which he wrote an article for our...
“Listening to the Patient Voice” – a Planetree story
I've long been surprised that Planetree.org is not better known by everyone who talks about patient-centered care, patient engagement, etc. I attended one of their webcasts in April and wrote about a great booklet they discussed. I'm taking the liberty of pasting in...
Jonena Relth: Participatory medicine: my first-hand account
Jonena Relth submitted this guest post to share her very positive experience with her surgeon. I was being prepped for surgery last week and my surgeon, Dr. Davies, came in to discuss the procedure. He explained to me that he had reviewed my file several times and...
