Two weeks ago — in advance of an SXSW interactive panel on the topic — I called for more patient visibility at medical conferences. In this age of the empowered patient, ignoring the most critical piece of the health care system is dangerous.
But over the course of my time at SXSW, I had the opportunity to spend a great deal of time with the great participants on the “Friending Pharma” panel — Kerri Sparling, Alicia Staley, and Allison Blass — as well as breast cancer advocate Jody Schoger, who drove up to meet us. And over the course of our conversations, it became clear that the issue of giving a voice to patients wasn’t as simple as handing the mic over to a well-known “e-patient” for an hour.
That’s a tact that has been taken, if not by large medical meetings, then by numerous conferences on e-health. Yet reviewing the agendas for some of those meetings, even those nominally oriented around patients, the patient perspective is relegated to window dressing. And I worried that SXSW was the same way. Yes, our “Friending Pharma” panel had patients, but those voices were swamped by the dozens and dozens of other panels swamped with consultants and entrepreneurs and corporate execs.
So I am coming to believe the challenge is broader than just getting some patients to play a token role. What’s needed is a critical mass of patient voices coming together to tell the rest of the system — the doctors and the payers and the pharmaceutical industry and the pharmacists and the nurses — what it is that patients really need (rather than the other way around).
That’s going to require a different kind of conference/meeting/symposium/confab, one that’s run by patients, for patients, and where the rest of us are present only to the extent to which it helps the community get resources or information or answers. That would be a revolution, but it’s one that’s sorely needed.
[UPDATE: In the comments, the always-informative Susannah Fox pointed me to Lucien Engelen’s brilliant “Patients Included” effort, which is a fantastic effort to get us closer to real patient involvement. Again, I think this is a matter of not just ticking a box, but making sure that patients are fully integrated into a program. I’ll certainly be looking for the “Patients Included” badge on future conferences, and I hope you will, too.]