e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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...
Support @HealthHats Danny van Leeuwen’s nomination for PCORI Board of Governors
Longtime SPM member Danny van Leeuwen is seeking nomination and support as a “patient/caregiver stakeholder” seat on the Board of Governors of PCORI, the Patient-Centered Outcomes Research Institute.
Psych Central podcast: “We often feel very isolated, but we have a lot more in common than we realize.”
As a social movement works its way through a culture, sometimes we discover surprising disconnects or parallels. Dr. Danny Sands and I were recently interviewed for the Psych Central podcast, and in the process, host Gabe Howard said something exactly like that....
Must Do By Midnight: Comment On NIH Plan For Handling ALL Health Data!
Guest post by SPM member Francie Grace. Here's a last minute Important item for your Monday To Do list. Spotted in a reminder tweet Friday from former U.S. Chief Data Scientist D.J. Patil (@dpatil): Hey data scientists, just a few days to give the @NIH @NIHDataScience...
TED joins the cry: Why isn’t publicly-funded research publicly available??
For years many have argued that it's wrong for research that's funded by the government (i.e. taxpayers) to be hidden from the people who paid for it (taxpayers) by hiding the results behind paywalls. This tradition not only makes it harder for taxpayers to...
Introducing the Patient-Centered Clinical Decision Support-Learning Network
SPM member, Danny van Leeuwen, Health Hats, introduces a new blog sponsored by the Patient-Centered Clinical Decision Support-Learning Network: Patient Expertise: Sharing and informing choices to connect research and clinical experience.
How the Latest on Facebook, Cambridge Analytica and the “Deep State” Could Undermine Patient Data Sharing and AI
There’s a potential large obstacle that could prevent the full benefits of the current go-go, bullish forecasts for AI to help make healthcare better: a decline in consumers’ willingness to share their personal data.
