Society for Participatory Medicine
e-patients.net blog
Health Professionals
e-pts resources, patient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
Announcing: the e-Patient White Paper, in Spanish
It’ s been a long time coming, but it’s here! From the English “e-Patients: How they can help us heal health care,” you can now click to download the Spanish e-Pacientes: cómo nos pueden ayudar a mejorar la salud. To read this post in Spanish, click here. From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández [...]
Read Moregeneral
First anniversary of our Declaration of Participation. Please renew!
How fitting for the Fourth – a year after our Declaration (see below), I just received my renewal notice for the Society for Participatory Medicine. Here’s a Doctor’s Channel interview, posted a year ago today, in which Society co-chair Alan Greene MD draws an analogy with America’s early presidents: Here’s the Declaration we posted a [...]
Read Moregeneral
Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on [...]
Read Moree-pts resources, medical records, pt/doc co-care, trends & principles
From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record”
An important study just got my attention. Patients and clinicians in different cities were asked questions about concerns and preferences. Titled “Insights for Internists: ‘I Want the Computer to Know Who I Am’,” the study reports: (emphasis added) Patients do keep their own medical records They want access to everything in their record Privacy worries [...]
Read Moree-pts resources, trends & principles, understanding statistics, Why PM
Journal of Participatory Medicine Launches at Connected Health
Press release for the October 22nd launch of the Journal of Participatory Medicine: Improving health care: Journal of Participatory Medicine will document methods that work for patient/provider collaboration Launch at Connected Health Symposium features essays by visionaries in health care, Internet, high tech, business, and sociology Patient engagement and patient empowerment are popular topics, with [...]
Read Morepatient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
#WhyPM?
Note: if you do not use Twitter an explanation of this post’s title may be in order. #WhyPM is the Twitter hashtag we have been using collectively to announce the launch of the Journal of Participatory Medicine and to mention topics of interest from the Journal and the Internet. So what is Participatory Medicine? Simply [...]
Read Morepolicy issues
HIPAA’s Broken Promise
If you hate HIPAA, it’s your lucky day. Paul Ohm is handing you ammunition in his article, “Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization.” His argument: our current information privacy structure is a house built on sand. “Computer scientists…have demonstrated they can often ‘reidentify’ or ‘deanonymize’ individuals hidden in anonymized data [...]
Read Morenet-friendly docs, policy issues, positive patterns, pt/doc co-care, trends & principles
Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?
Patient safety is important, and the safety of internet health data has been an ongoing concern for ages. We now have a great addition to the literature: “Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” It’s an editorial in the new issue of the Journal of [...]
Read More
