e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDays
SPM member Brenda Denzler had Inflammatory Breast Cancer (IBC), which was followed by years of intractable symptoms that her doctors couldn't diagnose - all their tests kept saying she was "fine." "But I live with this body," she says, and she knew things weren't...
A Romanticised History of SPM
As I was volunteering for SPM, it took years to learn its history and understand where we are, how the Society got created, and why it is what it is. This is not a historical well-documented history of SPM, it’s my imperfect interpretation of its history. Doc Tom...
Jane Sarasohn-Kahn: Social Determinants of Health – My Early Childhood Education and Recent Learnings, Shared at the HealthXL Global Gathering
Jane Sarasohn-Kahn makes a compelling argument at how important it is to think about all aspects of health, not just the healthcare system in her most recent blog post: Social Determinants of Health – My Early Childhood Education and Recent Learnings, Shared at the...
“Training medical students how to communicate with E-patients”
I've just discovered something I've long hoped to see: a training module to teach medical students about e-patients and how to interact with them! It's a paper in the journal Medical Teacher: “But Dr Google said…” – Training medical students how to communicate with...
Conservators
My painting teacher, Wes Sherman, calls himself a conservator. He shares paintings, pictures, and tidbits of art history with special attention to artists that inspire him. I learned so much from a year of tidbits shared on Instagram. As I was driving back from the...
FHIR #DevDays announces Patient Innovator Track finalists: two companies, two patients!
This is a cross-post from my personal blog. The organizers of the FHIR #DevDays conference next month have announced the four finalists who will come to Amsterdam to present their ideas to a panel of judges. I'll copy/paste here from the conference's Patient Innovator...
Congratulations to the 2019 Doc Tom Award Winners: Susannah Fox & Ileana Balcu
In 2009, the Society for Participatory Medicine was created to continue the work of "Doc Tom" Ferguson (1943-2006), the founder of the e-patient movement and a true visionary who foresaw decades ago that “e-patients” (empowered, engaged, equipped, enabled) would...
#S4PM2019 conference livestream: how to use Facebook Live
Hello, SPM members! - And honored guests, perhaps soon to be members. Join here. :-) Over the past few weeks, I have received quite a few inquiries about livestreaming opportunities for our conference in Boston, Tuesday, October 15. If you can't attend in-person, our...
Patient-Generated Health Data: Taking the Lottery Out of Love
(This post originally appeared Oct. 2, 2019 on EngagingPatients.org) The dating site Match.com wants to help singles “find the kind of relationship they’re looking for” by providing “the tools they need to help take the lottery out of love.” The Centers for Medicare...
Call to action! Second annual Doc Tom award nominations now being accepted!
Our Society’s 2nd Annual “Doc Tom” Awards are now open for nominations! Spread the word, and join us at our annual conference on October 15 for the announcement of our award recipients! Doc Tom Ferguson was the founder of the e-patient movement. To promote his values,...
A Family’s Guide to the ICU, Part 4: The Human Aspect of Care
This is Part 4 of a four part series, introduced Monday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [ Go to Part 1 | Part 2 | Part 3 ] [Download the Complete Family's Guide as a PDF] As you...
A Family’s Guide to the ICU, Part 3: Being An Advocate
This is Part 3 of a four part series, introduced Monday, based on my family's experience with our mother's unexpected and dramatic ICU stay and bilateral lung transplant. [Go to Part 1 | Part 2 ] [Download the Complete Family's Guide as a PDF] If you are in the...
