e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
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,...
@HealthHats: Paying patient experts
Danny “@HealthHats” van Leeuwen has posted one of the best things ever written on the importance of paying patient voices for their contributions.
Study: Facebook support group increases patient engagement, satisfaction. Who knew?? (Patients.)
No surprise to e-patients: a new study in the journal Surgery found that when patients facing a liver transplant connected with each other, they liked it. Read the article about it in MobiHealthNews or the original paper, if you can get it. Here's an extract from the...
Breaking News! JMIR Publications is the new publisher of Journal of Participatory Medicine
The following is a shared Press Release from the Society of Participatory Medicine and the Journal of Medical Internet Research: JMIR Publications is the new publisher of the Journal of Participatory Medicine (JoPM) (Toronto/Boston, Dec 6th, 2017) The Society for...