e-Patient Dave

Democratizing Healthcare

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March 7, 2012 By e-Patient Dave 1 Comment

Links for e-Patient Boot Camp #003 (Florida Health Care Coalition)

Here are links to content discussed in the e-Patient Boot Camp Monday, and my keynote and session Tuesday. Thanks to the Florida Health Care Coalition’s board for supporting the boot camp – I look forward to following up with participants!
  • 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…]

Filed Under: Events 1 Comment

February 29, 2012 By e-Patient Dave Leave a Comment

Two big announcements: Boot Camp #003: Orlando (Monday!) and another TEDx

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:
_______________

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 –

_______________

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.)

Filed Under: Events Leave a Comment

February 15, 2012 By e-Patient Dave 5 Comments

New diagnosis means I can’t attend South By Southwest

Back in August I blogged about my proposal to speak at South By Southwest, the super-hip high impact event every winter in Austin.  In October I was thrilled to announce that my proposal was accepted: Let Patients Help: Why Healthcare Must Wake Up.

Well, I have to cancel. It’s an unhappy side effect of two things:

  • My skin cancer diagnosis, and a couple other items (below), will hit me with $7,000-$10,000 of unplanned medical bills.
  • South By Southwest is such a competitive event that not only do they not pay speakers, you have to pay all your own expenses (travel, lodging, meals).

[Read more…]

Filed Under: Events, public speaking 5 Comments

February 2, 2012 By e-Patient Dave 1 Comment

Patient Engagement Links for Military Health System Conference

MHS conference Banner 2012

I’m speaking this morning at the Military Health System conference in Washington. It’s a high-speed panel, with 12 minutes per speaker, so I’m posting here the links to the sites and resources I’ll talk about. (This saves people from scribbling URLs or the frustration of not remembering later … just like getting information in the doctor’s office, eh? Sometimes the Web is useful!)

At bottom is “Let Patients Help” – my 16 minute TEDx talk from Maastricht, in the Netherlands, covering e-patient founder “Doc Tom” Ferguson on self-care, three e-patient stories, and “the e-Patient Rap.” But first, here are the links:

  • Society for Participatory Medicine, its journal, and its blog e-patients.net
  • ACOR community – great example of a patient community
  • Medical Self-Care (1985 article about Ferguson)
  • Open Notes project by the RWJ Foundation
  • e-Patients White Paper – check the Seven Preliminary Conclusions – in  Chapter 2
  • Visible Body – to understand anatomy
  • [Read more…]

    Filed Under: Events, Uncategorized 1 Comment

    January 27, 2012 By e-Patient Dave 3 Comments

    Links from the e-Patient Boot Camp

    The last ones still here for the belated class photo: host Shwen of Edelman, @TiffanyAndLupis, Siet, Jay @J_Nagy, Christine @bydls, @ePatientDave, Allison @AMBlass, and Jeff

    This page contains links to content discussed in the e-Patient Boot Camp today.

    • Society for Participatory Medicine, its journal, its blog e-patients.net
    • Deloitte Shift Index 2011 web page, PDF (5MB). Participatory Medicine is on page 84 (pg 88 of the PDF).
    • My viral TEDx video “Let Patients Help” (including “the e-Patient Rap” written by Keith Boone)
    • ACOR community – great example of a patient community
    • CaringBridge – create your own support “blog” without being a blogger
    • [Read more…]

    Filed Under: Events, Uncategorized 3 Comments

    December 26, 2011 By e-Patient Dave 3 Comments

    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.

    Media Lab New Media Medicine logoThere’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…]

    Filed Under: Events 3 Comments

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