Society for Participatory Medicine
e-patients.net blog
Clinicians
medical records, policy issues, Why PM
A glimpse of OpenNotes findings: “Patients are overwhelmingly interested”
“Patients are overwhelmingly interested in gaining rapid access to their notes … doctors have not experienced significant disruptions to their work.” Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our [...]
Read Morepolicy issues, reforming hc, Why PM
“Design and create a safe, decent, patient centered healthcare system.”
Yesterday the New York Times reported that some health insurers have applied to regulatory agencies to push premiums sharply higher - usually double-digit increases, while citizens are suffering. This falls on top of the 11 year history reported last year by the Kaiser Family Foundation: wages and inflation are up ~40%, while health costs and worker [...]
Read Morenet-friendly docs, patient networks
Examples, please: peer-to-peer healthcare
I’m writing an article and would love to tap into this community’s knowledge. I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with [...]
Read Moregeneral, understanding statistics, Why PM
“You’re 100% alive or 100% dead at any given moment”
A recurring training topic on this blog, originally for e-patients but also for clinicians and policy people, is understanding statistics. (See posts in that category.) Not only are statistics often misinterpreted; even when they’re correctly understood, patients too often interpret a slim chance as no chance. During my illness I heard from a long-ago co-worker. [...]
Read Morept/doc co-care, Why PM
What would a checklist for patients look like?
This springs up from a Twitter discussion this morning. It’s Atul Gawande’s fault, for his book “Checklists.” :-) Forward-thinking clinicians are doing it; participatory patients should to. Let’s get to work.
Read Moree-pts resources, positive patterns, understanding statistics
A new blog worth noting: “Evidence In Medicine”
Understanding medical research, at some level, is a fundamental e-patient skill. As we start digging for reliable new information, we have to learn to separate quality from questionable. (If you think medical journals are academically pure, you’ve got learning to do.) A new blogger has emerged who’ll be a big help: David Rind, MD.
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 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 Moree-patient stories, general, patient networks, pts as teachers, trends & principles
e-Patients Discover Unrecognized Side Effects
Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects brought on by popular drugs can go unrecognized for years. A recent review in [...]
Read Moregeneral
Social Healthcare: “Medicine in the Age of Twitter”
Physician Pauline Chen writes about “Medicine in the Age of Twitter” for the New York Times. The article suggests the need for our upcoming peer-reviewed Journal of Participatory Medicine: …a quick scan through peer-reviewed journals reveals only a handful of articles, and no evidence-based guidelines, to guide doctors on the use of social media. It [...]
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