e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Mobile Devices: Know the RISKS. Take the STEPS. PROTECT and SECURE Health Information
I haven't blogged about it much this year due to the pressures of my own work, but I'm seriously impressed with the relevance, quality and user-friendliness of the work being done by the folks at ONC (the health IT branch of the department of Health & Human...
PCORI Puzzle: Can a Marriage of Goo-Goos and Pinky-Ringers Transform Health Care?
The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly,...
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...
“As She Lay Dying” – a son calls on the health system to involve patients and families in improving safety
Warning: this doesn’t end well. Not for anyone in the story. Unless it changes you, as it did me. Jonathan Welch, MD, teaches at Harvard Medical School and practices in the ER at Brigham and Women’s Hospital in Boston. But, as is often the case in life, the...
Monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine
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 blog...
The Waiting Room
Check out the documentary film, The Waiting Room, set in the emergency department of Highland Hospital in Oakland, CA. I wrote a post about a screening and discussion in DC last night and I'm hoping to get a report from tonight's Cambridge, MA, event. If it's not...
When is patient data not patient data? When a patient wants his or her ICD data
The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of "gimme my damn data") is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda...
Wall Street Journal – Heart Gadgets Test Privacy-Law Limits
Our members Hugo Campos and Amanda Hubbard featured in this great piece in the Wall Street Journal Heart Gadgets Test Privacy-Law Limits http://online.wsj.com/article/SB10001424052970203937004578078820874744076.html?mod=WSJ_hpp_LEFTTopStories Very extensive and well...
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...
Engage with Grace
A guest post from the Engage with Grace team... One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you'll most certainly be right.’ We love it for three reasons: It reminds all of us that living with...
Rural e-patients face access challenges
David Gorn, a reporter for California Healthline, contacted me after the release of the Pew Internet/California HealthCare Foundation's Mobile Health 2012 report and asked if there were interesting findings on rural Americans. Indeed there are and I wish I'd thought...
Danny van Leeuwen: The Right Information in My Health Record
Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats. What do we e-Patients need in our electronic health records? Help by sharing in the...