For years we in the participatory medicine movement have been talking about the need to involve patients in all aspects of medicine – not just our own cases but even in the design of the whole system. The movement is exemplified by the Patients Included badge at right, created by Dutch health visionary Lucien Engelen.
Today I’m speaking at a truly extraordinary healthcare event in Hartford – it’s completely about, for, and aimed at the public – us ordinary people:
- The title is right on target: “Better Health: Everyone’s Responsibility”
- The event is scheduled from 12:45-8, so people only have to take a half day off work
- Admission is $35 including dinner(!!), or $10 without(!!)
Over 500 local people (aka patients) are attending. For more, see the event’s website.
In my talk I’ll mention various resources participants can look up, to learn more about the movement and boost their own abilities. I’m going to publish this post now, and through the day I’ll add various things as they come to mind.
BIG thanks to the event’s organizers, the CT Partners for Health partnership and its founder Qualidigm. Here are some starter links:
- HealthIT.gov – the very consumer-friendly government website (amazing, huh?) that introduces us to the new world of movable, viewable medical records
- OpenNotes.org, the Robert Wood Johnson Foundation study that established the world does not go all to hell when patients view visit notes; in fact people like it, in many ways.
- Here’s my original blog post about it, with the Seinfeld clip
- Here’s my post about the results, announced a year ago
- The flyer from the Office for Civil Rights that explains your right to get a copy of your records. Printable PDF – take it with you on doctor visits, if you wish.
- Understanding this flyer can be a little tricky – the page is titled “your privacy rights,” but it’s also about your access rights!
- When the radiology shop told me they wouldn’t give me the radiologist’s report, here’s how I handled it (calmly):
- “I know my HIPAA rights include getting a copy of my record, and I know it’s a Federal civil rights violation to say no. Who can I talk to?”
- Note that I didn’t argue with the person on the phone; she surely was just quoting office policy. That’s why I asked “Who can I talk to?” (And yes, I know “to whom” is better grammar.:-)) She put me on hold and came back in three minutes with “You can come pick it up.”
- Short video about your new rights under HIPAA
- Remember, HIPAA (one P, two A’s) is the Health Insurance Portability and Accountability Act. Originally designed to give you the right to change insurance companies, its added regulations say that you can check your records and you can insist that mistakes be fixed. Many many doctors don’t know this!
- Society for Participatory Medicine, its blog e-patients.net, and its journal. $30 to join for a year; blog and journal are free.
- Khan Academy – free high quality medical training videos (only a limited set of topics so far)
- Regina Holliday’s medical mural activist blog, with the Walking Gallery of Healthcare
- Ross Martin’s Gimme My DaM Data music video
- OsiriX radiology image viewer (Mac and Linux, not Windows)
- My book Let Patients Help: A Patient Engagement Handbook. (Watch for a follow-up email from the event for a special offer.)
John O'Rourke says
Thank you for sharing your story and perspectives yesterday. It was enlightening, and I hope to establish a more effective practice to better client (I’m a social worker, not a physician) engagement.
Best of luck, health and success to you.
e-Patient Dave says
Wonderful feedback – thanks, John! Please keep in touch about how it goes. Really.
Ed Tierney says