e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’ (KQED)
The advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help - or don't help - patients be active contributors to their families' health and care. This is excruciatingly important...
Guest post by Annette McKinnon: Power Equality: Why Is My Silo Two Miles Away?
This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid...
Patient POV: Seasons Change
This came over my transom from a friend who works with a major medical school's digital publishing group. Seems both relevant, and high impact. - Casey Seasons Change by Candace Barnes i. When I left for the hospital The night was bitter cold, And snow lay on the...
Good Medicine: Choosing What to Do and What Not to Do.
The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and...
#NoMUwithoutME: Primary School Edition
Created using Bitstrips. Text engine: Up Goer Five, "Can you explain a hard idea using only the ten hundred most used words? It's not very easy." Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally,...
NY Times editorial on forces who “knowingly interfere” with health info exchange
It's often hard for our movement to get major media attention, but it looks like it's happening: things are heating up on the "empire strikes back" front that we reported on twice this week. Friday's New York Times, page A30, carried an editorial Roadblocks to Sharing...
“No MU without ME”: join the campaign to fight health data hiding
Several edits made, 1-2pm There is a movement underway - a movement for patient liberation and autonomy - and the empire is striking back, interfering with our efforts. We - the whole movement, not just SPM - need your help. If you're in a hurry, skip down to the Do...
PHI Data Breaches May be Increasing, But It’s Not Impacting Our Sharing
According to a new study in JAMA, data breaches into people's protected health information (PHI) records are increasing: "[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data breaches over...
Proposed rule change will *reverse* data sharing requirements; Regina & Farzad call for “National Day of Action” to fight back
Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded. (Don't miss her comment, too, about the history of this issue and her role in it.) Change can provoke upset. Technological change can...
“Lighting Goes to Ground”: Peter Elias responds to Paul Levy in JoPM
Perhaps it's time for an argument about how we're doing this. Many of us in the Society for Participatory Medicine have long noted that what we're up to here is nothing less than full-bore culture change. In my own speeches I often note that culture is the set of...
SPM survey in Times Square: “Americans believe their medical data should be shared with their providers”
National Survey Also Shows 87% Think Health Information Exchange Should be Free First paragraph updated next day In case you missed it last month, there was an unprecedented, huge moment in SPM's history - we collaborated in a national survey of Americans' views and...
Regina Holliday’s whooping cough story in PharmaTimes: “Treat us as partners”
SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times...
