Links for Cooper and Partners “Work Well 2012”

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