e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
A New Measure for Patient – Physician Interactions
For more than two decades, the government and healthcare organizations have been using surveys to gauge the effectiveness of patient/caregiver interactions between them and their healthcare providers. They go by acronyms like CAHPS[1], PAM[2], HCS[3] and PEPPI[4]. ...
SPM at the World Orphan Drug Conference
The Society for Participatory Medicine (SPM) will have a small but important presence at the upcoming World Orphan Drug Congress, June 9-11, at the Boston Convention and Exhibition Center.  Anyone who knows me knows I have a heart for the rare disease community that...
Introducing the CHAMP Principal Investigator: Cait DesRoches (Part 2)
Editor's Note: Kevin recently spoke with Cait DesRoches, who was named Principal Investigator for the Society of Participatory Medicine's signature project, CHAMP, the Collaborative Health Care Action Measurement Platform. This is Part 2 of that interview. Part 1 can...
Introducing the CHAMP Principal Investigator: Cait DesRoches (Part 1)
Editor's Note: Kevin recently spoke with Cait DesRoches, who was named Principal Investigator for the Society of Participatory Medicine's signature project, CHAMP, the Collaborative Health Care Action Measurement Platform. Kevin Freiert: Cait, can you tell us a little...
Everylife Foundation Community Congress Annual Meeting Highlights
The Everylife Foundation for Rare Diseases (ELF) held their annual Community Congress meeting on December 11, 2025 at the National Press Club in Washington, DC.  The Community Congress acts as a coalition of collaborators with shared priorities, providing strategic...
Collaboration is the Best Medicine: Patient-Centered Collaboration Grounded in Caritas®
What if the most powerful medicine wasn’t a pill, but a team grounded in compassion? Healthcare today is complex. No single clinician can meet every need of a patient navigating chronic illness, acute crises, or preventive care. That’s why collaboration matters. When...
Collaboration is the Best Medicine: It’s the Heart of Caregiving
Editor’s Note: Recent SPM articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX...
Collaboration is the Best Medicine: How to Partner with Your Doctor for Better Care
Editor’s Note: Our recent articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine (SPM) suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX...
Collaboration is the Best Medicine: Bridging the Gap in Patient Participation
Healthcare works best when patients and providers work together as true partners. This fundamental principle of participatory medicine—where patients are active collaborators rather than passive recipients of care—has never been more important. Yet recent survey...
Dealing with Medical Uncertainty, Ambiguity, and Frustration
My primary care physician motivated me to share my story, which is perhaps best described as an unfinished journey. What started to be a typical runner’s problem morphed into dealing with limited personal mobility with neuropathic pain and loss of sensation. I was...
Collaboration is the Best Medicine: The Time for Participatory Medicine is Now
Editor's Note: Kevin Freiert and Dan Halpren-Ruder, MD are part of a group working to launch an exciting new SPM inititative, described here. The Promise Participatory medicine promises to enhance quality while potentially decreasing costs. By actively...
In Memory of Nancy Finn: e-Patient, Advocate, Author, SPM Supporter
We don’t regularly post obituaries on the e-Patients Blog. But sometimes we lose someone of great moment to the SPM and the e-patient community. Nancy Finn was one such person. Nancy Finn was a beacon of inspiration and advocacy. Recently, we faced the profound loss...
