This is the first of two posts about the inspiring Patients 2.0 panel I helped organized at Health 2.0 DC. This one will explain the rationale for organizing such a panel. The second will provide a link to all the presentations and to the panelist biographies.
A while back, while he entire country was wondering if “healthcare reform” was ever going to become a reality, I had a conversation with Matthew Holt about the need to have a patients-only panel at the Health 2.0 conference. Matt graciously accepted the idea.
The panel was originally organized to convey, from the patient viewpoint, a few ideas, based on the following facts:
- payment reform is not health care reform,
- nobody has more at stake in real health care reform than patients,
- patients are the most underutilized resource of the health care system and,
- meaningful reform won’t happen until the patients are at the center of the effort.
Each of the 6 patient advocates that were part of the panel showed us that meaningful reform happens  one disease, one problem, ….
The Patients 2.0 panel and the video that launched the Moment project gave the Health 2.0 DC event its most unforgettable moments – Regina Holliday, Josh Sommer and others reminded us all why we were there, the huge challenges that lie ahead – access to personal medical data, and better ways of capturing what works for rare (and all) diseases. We’ve all heard the stories and now we’re all accountable for making a difference.
Gilles, congratulations on putting together this panel.
I knew bits and pieces of each person’s story, but seeing their presentations and hearing their whole stories was an incredibly opportunity to see participatory medicine in the wild.
From maternity care to cancer to amputation to neck injury – each unique experience drew us back to the essential lessons: engage, ask questions, connect with other patients and caregivers, don’t give up.
Looking forward to sharing the slides (and hopefully the audio) from the session with a wider audience.
Agreed, Susannah – great job, Gilles!