e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
SPM’s comments on important proposed CMS interoperability rules
This is the first of two posts about this important policy issue regarding portability of our medical records. The second is by Michael Millenson, who did the lion's share of this work, as noted below. Our Society's Advocacy and Policy chair Vera Rulon @VRulon has...
Request: Harnessing the patient voice from the ward to the boardroom
I know there are numerous initiatives along these lines so please circulate this widely. Help publicize and share what others are doing to incorporate patient perspectives in the present and future of healthcare! I've received the following request from Luke...
SPM on TV in Hartford after last week’s “Better Health” conference
Email subscribers, I'm not sure the video below will come through to you - if it doesn't, click the headline to come see it online. http://www.wtnh.com/ct-style/the-better-health-conference-helping-to-change-healthcare-as-we-know-it/1236774613 Last week at the sixth...
Give Me My DaM Data::The Revolution
SPM advocates vociferously for patient ownership of their own data. Success would be revolutionary. But revolutions do not suddenly appear. They result from persistent long-term effort, strategy, and tactics. Key milestones often only appear in hindsight. The...
Skeptics ask why patients would even WANT their medical images. We asked on Facebook.
Skeptics ask why patients would even WANT to look at their medical images. We asked for true stories and they blew us away. Give us our data! ALL our data!
Cinderblocks 2018
Thanks to support from SPM Travel Fund I attended Regina Holliday's Cinderblocks Conference in Grantsville, MD. Still pound-for-pound the best conference going. Several days of local and national presentations about health, public health, and advocacy. Small, good...
You Don’t Have to be Alone to be Lonely
We are in the midst of a loneliness epidemic that affects millions, whether you’re married, single or somewhere in between, young or old, an urban dweller or live in a remote village. Loneliness lurks in our shadows, yet unlike smoking or obesity isn’t socially...
BMJ seeks new patient essays for “What your patient is thinking” series
As regular readers know, this blog has long been friends with The BMJ (formerly the British Medical Journal), especially because of its world-leading Patient Partnership campaign including the Patient Advisory Panel, which includes several SPM members and has an...
SPM members Lorraine & Gene Sacco’s story nominated for Emmy
Posted today on our SPM Connect member forum by SPM vice-chair Joe Ternullo https://www.youtube.com/watch?v=Xgz9B0Lvzaw Join me in cheering on SPM members Lorraine and Gene Sacco, founders of the Reid R. Sacco Adolescent & Young Adult Cancer Alliance....
Paying for value. I’m overwhelmed. Please read this.
As you may know from previous posts, I sit as a patient/caregiver stakeholder on a Center for Medicare and Medicaid Services (CMS) technical expert panel (TEP) about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS...
Join the VA’s “Open API Pledge” session at Health Datapalooza
In the interest of speed, this is a quick note for interested parties - apologies for minimal explanation. 90 minutes from now, 2:30 pm ET on Friday 4/27, at the Health Datapalooza conference in DC, people will gather in an "unconference" session to discuss the US...
Join SPM’s workshop May 16 at “What’s The Fix?” at Dell Medical School. Free registration!
Our Society for Participatory Medicine's presence and impact in the world is escalating this year, thanks to many factors. A big one is the addition of activist board members like Burt Rosen of member company HealthSparq, and another is that our time has come. A big...
