e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Through the Maze: A New Model for Equitable Health Data Exchange
My brother Jacob was born with a chronic neurological condition that caused him permanent physical and mental disabilities. As the only other child in a single parent family, I was often with Jacob during his frequent hospital stays and doctor visits. It is through...
How Trust Fuels Equitable Health Outcomes
At the Society for Participatory Medicine, we recognize trust and respect as a two-way relational dynamic essential to our mission to transform the culture of healthcare relationships so people can live their best lives (see our Participatory Medicine manifesto). And...
The Power of the Prescription Pad
At some point in our lives, we’ll be handed a little sheet of paper from our physician that has scribbled on it the medication we need, how much of it, and how often we should take it. These little slips of paper are power. They tell us that in order to get better, we...
A Reminder of How To Care Through Self-Reflection
After 28 years of nursing I could potentially consider myself an expert in the field. But this perception couldn’t be further from the truth. I still come home from a shift and often wonder and hope that I brought comfort to at least one patient. Did I do enough?...
Glimmers of Hope: Real Progress In Participatory Medicine
Twenty-five years ago, I learned I had a large liposarcoma in my left quadricep. I have written elsewhere about my surprise when my surgeon informed me that he and the team had changed the treatment plan. What team? Who are these people? Why wasn’t I at the team...
Participatory Medicine: the Final Mile of Health Care System Change
When I describe the concept of participatory medicine, people who work in the healthcare industry often confuse it with other change initiatives, like social determinants of health or better access to care. It’s a different story when I describe participatory...
AI Gives SPM a New Opportunity to Lead
I recently posted an article entitled, “In Cancer, Patient-Empowering AI Begins to Change Care, Relationships,” that contained this declaration, “Good medicine needs to become participatory medicine, not least because involving the patient as a partner consistently...
In hospice, Mighty Casey receives SPM’s “Doc Tom” Award
The board of our Society for Participatory Medicine has voted unanimously to give the society's "Doc Tom" award to life member Casey Quinlan, who is in hospice in Richmond VA, as we blogged this month. On Saturday former board member Jan Oldenburg presented Casey with...
Full scholarship or free reg for DIA Global Boston: apply by March 31
On Twitter this morning SPM member Stacy Hurt announced that the big pharma conference DIA Global in Boston this June is #PatientsIncluded. Several levels of support are available, including one full scholarship including travel expenses, plus ten free patient...
Mighty Casey is entering hospice
Update 3/19: We've opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration. This news hit us worse than a...
How to Increase Applications from Underrepresented Scholars for Funding Mechanisms
Recently, there has been a large emphasis by organizations that are interested in addressing bias, health equity, and increasing diversity. The verdict is still out if these are real structural changes, or just surface statements that have no real impact. It is...
When a Genetic Counselor Brought Information – and Comfort
Editor’s note: In her book, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease, Taylor Kane shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen...
