I’m speaking today at a relatively new type of event for me – worksite wellness. (I often speak at conferences that include employers, and in May I spoke at the Rich Products company health fair, but this is the first event that’s a seminar for HR and wellness executives about worksite wellness.) The host is Cooper and Partners, a company whose professional content and image are amazing given their new-company status. Keep an eye on these folks – they know what they’re doing.
Here are some sites and resources I’m mentioning.
ePatientDave.com (This website – subscribe free – see box at right)
Society for Participatory Medicine
(“the e-Patient society”)
- Join as a corporate and individual member
- Volunteer to lead an initiative (email)
- The Society’s website
- The Society’s blog, e-patients.net where I write from time to time (as others do). Free subscription.
- Journal of Participatory Medicine (peer reviewed journal with narratives and evidence on the status of the movement). Free subscription.
Resources for e-Patients
- ACOR – the patient community I used
- My own nascent, informal list of patient communities on this site
- CaringBridge – create your own support “blog” without being a blogger. See also CarePages and CareFlash
- National Business Group on Health’s Finding trustworthy health information on the internet
- Visible Body – to understand anatomy
Understanding patient engagement
- Peer-to-Peer Healthcare – Susannah Fox’s research on what e-patients actually do (at the Pew Internet & American Life Project)
- “Doc Tom” Ferguson’s e-Patient White Paper sponsored by Robert Wood Johnson’s Pioneer Portfolio (check the Seven Preliminary Conclusions in Chapter 2)
- The PAM Patient Activation Measure (commercial survey tool created at U of Oregon)
- The Patient Engagement Framework – taxonomy of engagement behaviors, from Jessie Gruman’s Center for Advancing Health
- The Open Notes project – what happens when patients see the doctor’s notes? Again by Robert Wood Johnson Foundation – results to be announced October 11
The “Gimme My DaM Data” movement
- My viral TEDx video “Let Patients Help” (including “the e-Patient Rap” written by Keith Boone)
- Ross Martin’s song “Gimme My DaM Data” (with his garage band; video recorded at TEDMED 2012 at the Kennedy Center)
- Hugo Campos, the ICD patient who wants to see the raw data stream – his Give me my data talk at TEDx Cambridge 2011
- The VA / Medicare / DoD Blue Button
- Patient speakers bureau SpeakerLink.org