by Susannah Fox | Oct 30, 2008
The Center for Connected Health’s 2008 Symposium was held in Boston on October 27-28, 2008. I gave a talk entitled, “Participatory Medicine: How User-Generated Media are Changing American Attitudes and Actions, Online and Off.” As always, the...
by Gilles Frydman | Oct 15, 2008
“Crowdsourcing: the act of taking a job traditionally performed by a designated agent and outsourcing it to an undefined, generally large group of people in the form of an open call.” Jeff Howe Or in other words Participatory Outsourcing. There is clearly...
by Susannah Fox | Sep 15, 2008
The National Institutes of Health recently gathered a group of consumers and people who study them. We met off-site at a hotel in Bethesda, which I thought was an apt metaphor for the day’s question: How can NIH better communicate with the public? First, I said,...
by Dan Hoch | Jul 16, 2008
Professional medical societies are not quite like the secret society Skull and Bones at Yale University, but they may well look that way to many patients. In most cases, their sole reason for being is to serve their members in a pretty narrowly defined way. The...
by Dan Hoch | Jul 10, 2008
In a piece in the New York Times 7/9/08 (Abuses are Found in Online Sales of Medication) a report (also out Weds) from Columbia University is described. According to the authors, 85% of online sites that sell medications directly to the public do not require a...
by Susannah Fox | Jun 23, 2008
I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45...
by Gilles Frydman | Jun 17, 2008
Starting in the mid 90s a new paradigm of medicine was born ― first as a grassroots movement and then rapidly evolving into a phenomenon of great interest to public health professionals who started early to study its potential impact on the healthcare system. This...
by Susannah Fox | May 15, 2008
I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence. Reforming health care is too big for most people to grasp; creating spaces for participatory medicine...
by e-Patient Dave | May 11, 2008
Chapter 12 of Randy Pausch’s best-selling book The Last Lecture opens with a classic anecdote of what it looks like when an empowered patient practices participatory medicine with an equally participatory care team: CT scans revealed I had pancreatic cancer, and it...
by Eric Bersh | Jan 19, 2026
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...
by Eric Bersh | Nov 7, 2025
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...
by Vickie Wilkerson | Oct 6, 2025
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...
by Daniel Halpren-Ruder, MD | Sep 23, 2025
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...
by Danny Sands, MD | Jul 16, 2025
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...
by Eric Bersh | May 29, 2025
Editor’s Note: This is the second part of Josh Rubin’s post. The first was published on May 23, 2025 Building Upon a Powerful Foundation of Patient Empowerment In part 1 of this post I paraphrased Dr. Casey Means (referencing Robert F. Kennedy, Jr.), noting that...
by Eric Bersh | May 23, 2025
Editor’s Note: This post (in two parts) builds upon email correspondence the author sent to Robert F. Kennedy, Jr. and key members of his Make America Health Again (MAHA) team beginning in November 2024. It aims to illuminate alignment between three principles (and...
by Mary Hennings | Dec 30, 2024
The news cycle is moving on, but the killing of Brian Thompson was awful, no matter how one feels about the shortcomings of the American health care system. In a recent New York Times opinion piece, Andrew Witty, president of the UnitedHealth Group, wrote that no one...
by Mary Hennings | Aug 7, 2024
Over the past several months, SPM’s board has engaged in a planning effort, as it approaches the fifteenth anniversary of its creation. Our goal is to assess the state of the Participatory Medicine movement and discern where SPM could have its greatest impact in...
by Danny Sands, MD | May 6, 2024
I care for a diverse population of individuals in my primary care practice. It’s hard enough to motivate behavior change in people who have little motivation, but it’s even more challenging when it’s hard to connect with them because of cultural disparities....
by e-Patient Dave | Mar 29, 2024
Guest post by long-time SPM member Tracy Zervakis. Participatory medicine involves professionals and patients working together to get healthcare done. When a treatment plan is agreed and chosen, the best outcome obviously requires carrying out the plan – but...
Collaboration is the Best Medicine: Patient-Centered Collaboration Grounded in Caritas®December 16, 2025
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