e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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.
Join SPM’s “Patient Perspectives” interop tour at #HIMSS18 (11 am Weds)
UPDATE FOR ATTENDEES: Try to arrive 10 minutes early -- 10:50 am -- to get oriented. On arrival a host will scan your badge and point you to the big round "Discovery desk" where we'll gather. We'll talk a bit for 10 minutes, then pick which "use case" demonstrations...
The Heart Attack That Wasn’t
Editor’s Note: This is a first installment (we hope) in a series about an all-too-real-life medical drama experienced by a former SPM board member and longtime sci-tech journalist Carla Berg-Nelson (aka “Carla B.”). There is much to learn here about being an...
Apple’s new health data download feature: nice start, but little use for sick people
The health IT sphere is abuzz with Apple's groundbreaking announcement yesterday of the new ability, in the beta version of iOS 11.3, to download lab results, allergies, "problem lists," etc. from multiple hospitals. So far twelve hospitals have signed on as...
“Transforming the Culture of Care” session 2: Patient Experience panel
Great panel on the participatory aspects of patient experience, with speakers from a leading quality non-profit (Mass. Health Quality Partners), a hospital (Beth Israel Deaconess) and a patient advocate (Grace Cordovano). The real juice comes in the Q&A.
Mark Sullivan: Who gets to define the clinical problem?
Guest post by SPM member Mark Sullivan, MD, PhD, who is Co-Director of Behavioral Health Services at the University of WashingtonCenter for Pain Relief. We welcome guest posts from SPM members - see guidelines here. I joined the Society for Participatory Medicine...
The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project
Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse,...
