• Society for Participatory Medicine, its journal, its blog e-patients.net
• National Business Group on Health’s Finding trustworthy health information on the internet
• My viral TEDx video “Let Patients Help” (including “the e-Patient Rap” written by Keith Boone)
• RA Warrior – Kelly Young’s RA patient community
• ACOR – great example of a patient community
• CaringBridge – create your own support “blog” without being a blogger
• e-Patients White Paper – check the Seven Preliminary Conclusions – in Chapter 2
• Ferguson Report – e-Patients as Medical Researchers
• Health Leaders media & magazine
• Peer-to-Peer Healthcare Pew Internet – Independent Research
• Seattle Mama Doc – Wendy Sue Swenson
• [Read more…]

The good news is, big stuff is happening.  Lots of it.  The bad news is, boy is it busy around here. Driving me nuts. :-)

In normal times each of these would get a separate post, but these are not normal times, so:
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e-Patient Boot Camp #003 – Orlando, March 5, with Kelly Young!

Yes, that’s NEXT MONDAY.  Special Guest: “R A Warrior” Kelly Young! If you’ve seen my TEDx talk “Let Patients Help,” you’ll recall Kelly, who viewed her scan CDs (and whose doctor fired her). She will present her case at this special edition.

Boot Camp #003 is being sponsored and produced by the Florida Health Care Coalition, as a pre-conference – at no extra cost – attached to their Tuesday-Wednesday event “Healthcare (R)evolution: Best Practices in Patient Engagement.” FHCC is a coalition of self-insured employers; regular readers will know I’ve been saying this is the segment that most wants to produce results now, not just talk about engaging patients.

Registration for the (R)evolution is open to the public. It’s just $150, and includes the boot camp, which by itself would be $500, were it not for FHCC’s sponsorship. Speakers at the (R)evolution (not the boot camp) include my buddy Lee Aase, the guru of the Mayo Clinic Center for Social Media. Both Kelly and I are on the Center’s advisory board.

• Brochure here (PDF, 900k)
• Register here

And if that’s not enough fun, how about this –

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TEDx O’Porto, April 28

Cancer patient Manuel Fortaz has organized this special event, in the Portuguese city of O’Porto. The theme is “From the Heart, Guts,” and Manuel embodies it – he’s producing this while actively involved in fighting his cancer.

I don’t yet know what I’ll talk about – heck, at TEDx Maastricht I didn’t know what I’d be saying until lunchtime that day. It will surely be about the role of patients!

TEDx O’Porto is open to applications to attend. Apply here. The price is just € 75.

(And yes, I’ll also be attending TEDx Maastricht again on April 2, but not as a speaker.)

As 2012 starts up, I have a feeling that patient engagement’s time is here. The movement is credible and has become tangibly real. Consider these 2011 tidbits:

• In January Time had its first article about a googling patient who helped a doc nail the right diagnosis.
• In April, TEDx Maastricht was the first TED event to be heavily patient-centered, with many presentations by e-patients and empowering physicians
• July’s e-patient tour of Spain, resulting in the Spanish translation of the e-patient white paper
• In the government section, the US Department of Health & Human Services had a four-city road show about consumer engagement – “Putting the ‘I’ in Health IT”
• In August the “SCAD sisters” were featured in the Wall Street Journal and have since become internationally famous
• September:
  • The twenty-patient e-Patient Bill of Rights pre-meeting at e-Patient Connections
  • The first e-Patient Boot Camp, presented as a Master Class in the Netherlands at UMC St. Radboud
• In October the Mayo Clinic held its first e-patient day – with five unknown e-patients (not just the usual cast of stars)
• December’s news of mega-blogger (and new cancer patient) @Xeni’s rude awakening to the poor state of health IT, and the need to take the reins ourselves: one of her scan CDs contained images that were rather obviously “some dude’s.” (On Twitter she referred to it as “the #ghostpenis.”) Then she had a horrid first MRI experience, which led quickly to the start of a “My First MRI” patient training initiative.
  • In a matter of days she became a full-fledged engaged patient, thoroughly on top of her data – within a week she was helping docs read her scans on her Mac, because they couldn’t view them on their own machines
  • She ditched the rude MRI shop and got her next one in a much nicer place.

There’s more, but suffice it to say, 2010 looked nothing like that. e-Patient is finally beginning (just beginning) to show up in the mainstream. And 2012 looks to be stronger.

[Read more…]