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ONC Consumer Engagement working session Aug 4 2011

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ONC Consumer Engagement working session Aug 4 2011

  1. 1. Let Patients Help Reshaping the Care Relationship in the Age of “e” “ e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email_address]
  2. 2. Paternalism is Poison Proxies are Hazardous Sometimes Advocates Lose Touch Bottom Line: Ask us.
  3. 3. OpenNotes <ul><li>RWJF funded study to collect evidence: What does happen when we get to see our records? </li></ul><ul><ul><li>Does the world end for doctors? </li></ul></ul><ul><li>First finding: “When are you starting this thing?” </li></ul><ul><li>Second: PROVIDERS DO NOT PREDICT WELL WHAT THEIR CONSUMERS WANT </li></ul><ul><ul><li>“ Good idea?” Half of HCPs, 95% of patients </li></ul></ul><ul><ul><li>“ Patients will worry”: 2/3 of HCPs; few patients </li></ul></ul><ul><ul><li>“ Patients will be confused”: 2/3 of HCPs; few pts </li></ul></ul>
  4. 4. Markle Foundation meeting <ul><li>New York, May 2010 </li></ul><ul><ul><li>VA, Medicare, Pew Research, Clay Shirky, innovators </li></ul></ul><ul><li>“ Give people their data” </li></ul><ul><ul><li>“ Do people really want it?” </li></ul></ul><ul><ul><ul><li>“ Don’t worry about that” </li></ul></ul></ul><ul><ul><li>“ What will they doooo with it?” </li></ul></ul><ul><ul><ul><li>“ Don’t worry about that” </li></ul></ul></ul><ul><ul><li>“ Why can’t you just use insurance data?” </li></ul></ul><ul><ul><ul><li>“ Read e-Patient Dave” </li></ul></ul></ul><ul><ul><li>“ What format?” </li></ul></ul><ul><ul><ul><li>“ Don’t worry about that.” </li></ul></ul></ul><ul><ul><li>“ But how can we make it work?” </li></ul></ul>
  5. 5. Voilà: <ul><li>Introduced August 2010 </li></ul><ul><ul><li>VA “My Health eVet” site </li></ul></ul><ul><ul><li>Medicare </li></ul></ul><ul><li>Do people want it? First ten weeks: </li></ul><ul><li>85,000 downloads by veterans </li></ul><ul><li>12,000 downloads by Medicare users </li></ul><ul><li>~ 100,000 downloads </li></ul>
  6. 6. Voilà: <ul><li>85,000 downloads as of Nov 8 </li></ul><ul><li>366,000 as of January 8 </li></ul><ul><li>473,000 by April 16 (213,000 unique) </li></ul><ul><li>500,000 by July 25 (285,000 unique) </li></ul><ul><li>Another 90,000 registrants in DOD & Medicare </li></ul><ul><ul><li>And the word hasn’t gotten out yet. </li></ul></ul><ul><ul><li>And the tools to value-ize the data are just starting </li></ul></ul>
  7. 7. We (all) deserve modern, user friendly software
  8. 8. Thomas Goetz, Wired <ul><li>“ It’s time to redesign medical data” </li></ul>
  9. 9. Plus: Modern software allows mash-ups!
  10. 10. Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com
  11. 11. Why not “Google Earth for my body”?
  12. 13. “ I want to note especially the importance of the resource that is most often under- utilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004
  13. 14. Let Patients Help Reshaping the Care Relationship in the Age of “e” “ e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email_address]

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