Society for Participatory Medicine
e-patients.net blog
e-pts resources
e-pts resources, general, research issues, trends & principles
The FDA Patient Network Website – Patient-Centeredness that Walks the Walk
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the [...]
Read Moree-patient stories, e-pts resources, key people, patient networks, social media
How Things Change
SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month. In less than two years the group has gained [...]
Read Moree-pts resources, patient networks, research issues
A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization
Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc) It’s “created and maintained by thyroid cancer survivors,” with a long list of physicians as partners [...]
Read Moree-pts resources, PM Tech, policy issues, reforming hc
Provide Your Input to Inform ONC’s Consumer eHealth Strategy
On Monday, March 25, 2013, ONC, in collaboration with Cornell University, launched a new web platform for obtaining public input to inform health IT strategic planning. Check out the new PlanningRoom site, and provide your thoughts. ONCs initial focus is on consumer eHealth. To encourage public input to inform the consumer eHealth strategy, ONC is partnering with [...]
Read Moree-pts resources, PM Tech, social media
Tweetchat on Wed March 20 about Gimme my DAM Data, Blue Button Plus and Commonwell
Please join us for a tweetchat this evening – Wednesday March 20 at 8 PM ET/ 5PM PT. We’ll talk about: What’s new with Gimme my DAM Data #gmdd ? - Wall Street Journal picked the story at SXSW conference http://epatientdave.com/2013/03/18/wall-street-journal-picks-up-gimme-my-dam-data-song/#.UUmxrBysh8E Blue Button Plus – why should patients fight for it? #bluebuttonplus #abbi http://bluebuttonplus.org/history.html CommonWell alliance [...]
Read Moree-pts resources, hc's problem list
NEJM: Post-Hospital Syndrome
SPM member Marge Benham-Hutchins (see her December post) spotted this item. It’s a vital point for patient and family awareness, leading to patient engagement – patients as responsible drivers of their health. I added the italics below. From a recent Perspectives essay in the New England Journal: “To promote successful recovery after a hospitalization, health [...]
Read Moree-patient stories, e-pts resources, hc's problem list, key people, policy issues
Top 5 Posts of 2012
I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a clear call to action in favor of open access to research. [...]
Read Moree-patient stories, e-pts resources, medical records
Give us our damn data – or at least stop screwing up when *you* use it.
A guest post by SPM member Marge Benham-Hutchins, PhD, RN, an assistant professor of nursing informatics at Texas Woman’s University. This is an email she sent me today, citing an online discussion of the appalling death in the Health Affairs column that Susannah Fox wrote about yesterday. IT didn’t affect the passing of Marge’s husband from cancer [...]
Read Moree-pts resources, general, policy issues, positive patterns, reforming hc, trends & principles
New Hospital Safety Score data: a key enabler for informed choice
The PDF at right is a summary of sample data from this new dataset. The Leapfrog Group is a highly respected patient safety organization. They’ve earned a reputation for carefully and thoughtfully assessing providers’ actual performance in quality and safety. Their mission statement: To trigger giant leaps forward in the safety, quality and affordability of health [...]
Read Moree-pts resources, general
New series on overdiagnosis
We’ve long written here about Health News Review, the terrifically empowering and educational news-dissection service started by Gary Schwitzer and now involving numerous writers. Health News Review was modeled after a similar service in Australia started by Ray Moynihan. Greek SPM member Kathi Apostolidis just wrote: Ray is now pursuing his PhD on overdiagnosis and working [...]
Read More
