2010, 11, 12: Patient engagement rising, right into The Media Lab’s January hackathon

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.

The Media Lab’s hackathon

So it’s sweet that in mid-January, in a between-gigs week, I’ll get to drop in on the MIT Media Lab’s  Health and Wellness Innovation hackathon:

Why: Healthcare is in crisis; every year we spend more and get less. At the core of this crisis is a lack of patient engagement. Patients are motivated to be involved, but they are consistently undervalued and marginalized. Current efforts in consumer health are fragmented and fail to leverage a common infrastructure to promote each other’s success through positive feedback.

What: … a two week hackathon that brings together students, health professionals, and innovators from industry to build technology that empowers patients to take control of their health. … $10,000 in  prize money awarded by Spark capital …

The first day I’ll be part of the mob, orienting the teams and spurring things in as much of a patient/consumer-driven direction as I can.  (And, heh, hopefully picking up some hot and exciting ideas…)

As I say, this is sweet. Usually events like this are in DC or San Francisco  – so glad to have one where I can just drop in. Can’t wait.

Here’s to 2012!