e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition
Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based...
Are Physicians Truly Engaging with their Patients?
A recent report by CMS detailed statistics on how many health providers had actually received Meaningful Use (MU) incentive payments. As of March, 2013, 160,890 eligible professionals had received Medicare incentive payments and 83,765 professionals had received...
Cleveland Clinic To Give Patients Full Access to Data
Healthcare IT News posted a detailed story about how the Cleveland Clinic plans to roll out its new MyChart EMR to give patients complete access to their health records by the end of 2013. According to the article, the Cleveland Clinic believes this move is "the right...
Erin Moore: Are Patients a Distraction? I think not…
This guest post is from SPM member Erin Moore @ekeeleymoore and is reproduced from her blog, 66 Roses, which is dedicated to finding a cure for cystic fibrosis. There was a healthcare conference last fall that I desperately wanted to go to. The conference was for...
Lisanne St Onge Klute: The Power of Social Healthcare; Becoming an Empowered Patient and Surviving a Cavernous Malformation of the Brainstem
This guest post was written by Lisanne St. Onge Klute and originally appeared on The Story of iPatchman, a blog for e-patients with brain tumors. It is a great example of the power of social media for helping e-patients find the best treatment. Thanks to Akiva...
Blue Button Plus Challenge – Call for Patient Input
ONC is sponsoring the Blue Button Plus Challenge -- putting up some prize money to incentivize teams of developers to come up with solutions to the problem of getting patient data to patients. The first phase of the challenge is crowdsourcing ideas from patients about...
Patient-family advisors: “Don’t say you volunteer – say it’s pro bono”
Updated 6/4 in response to Tony's comment, described below. I'm speaking today at the fifth annual Patient & Family Centered Care conference, hosted by PFCC Partners in Long Beach, California. (They're not related to the similarly named IPFCC.) At today's lunch...
Monthly Introduction to e-Patients.net
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here's how to become a Society member, individual or corporate. Our publications: This...
When Bad Heads Go Viral: How A Malformed Headline Is Skewing Medicine’s View Of The Patient’s Role In Decisions
See my post about this on Forbes. This is as close as a call to arms as we ever get around here, given how collaborative we are. But this is a case of bad science and/or bad reporting, with clear harm to the participatory medicine movement. Whatever the reason, it...
Caregivers, please share your stories
The Pew Research Center will release a new report about caregivers in June. As we prepare, I'm looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a...
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...
How to be Participatory in the Face of Adversity
From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking...
