e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Health informatics and why participatory healthcare is key to its future
Prologue from Dr. Sands: I trained in clinical informatics because of my belief that we needed to better empower healthcare professionals with information technology so they could take better care of patients, and spent many years creating and implementing these...
Web introduction to a crowd-sourcing platform for COVID-19 “information therapy”
"Information therapy" has long been part of the participatory medicine mindset. (See our 2007 post that mentions Josh Seidman PhD's Center for Information Therapy - he went on to be president of SPM.) In the COVID-19 era, now more than ever, it’s essential that clear,...
COVID-19 Information Resources: SPM, Peter Elias MD & Others
"The cure for anxiety is knowledge and preparation." That line is from the hip and edgy (and smart) Stanford doc @ZDoggMD in the amazing live conversation on YouTube he had with his 12 year old daughter last Friday. Here are some resources. Society for Participatory...
Long-awaited US rules on data access and information blocking are out
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I'll expand this post with more links as we digest what's been offered and will unfold in the coming week. The ONC rule...
Three minute patient video nails the suffering from information blocking
Six weeks ago we hosted the Patient/caregiver letter supporting proposed HHS rules on improving flow of our data. It's a crowdsourced collection of stories of how patients suffered, were harmed, incurred costs or delays because their own health data wasn't at the...
“Help me see the dragon I’m slaying”: pathologists meeting directly with patients
Now this is patient-centered care. This may be the most wonderful participatory innovation I've seen since OpenNotes in 2012. This one's completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see their tissue...
Epic, Using Scare Tactics & Paternalism, Opposes ONC Rule
Epic is a widely used Electronic Health Record (EHR) system by thousands of hospitals across the United States. There's a very good chance that your physician uses Epic software in their everyday practice. Among many other tasks, Epic's software helps manage your...
Patient/caregiver letter supporting proposed HHS rules on improving flow of our data
We, the undersigned, are patients, family caregivers and advocates who strongly support ONC’s rule to improve patient data flow. See our stories.
Why I Joined SPM: Brad Power
Editor’s note: this guest post by SPM member and lymphoma survivor Brad Power (LinkedIn) shares his journey to our society and our #S4PM2019 conference last October. Members can submit guest posts to our blog (guidelines). Join SPM here. Here's the introduction video...
Apparently Only Doctors Can Help on Twitter?
In a piece entitled, "Why Doctors Need to be on Twitter," Jack Turban, MD and Jessica Gold, MD seem to have transported back in time to a world where e-patients don't exist. The piece argues that because Twitter is such a cesspool of misinformation and outright lies,...
“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...
