AMSA OpenNotes / Let Patients Help speech, March 2014

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e-Patient Dave speech on OpenNotes / Let Patients Help at the March 2014 American Medical Students Association annual convention.

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AMSA OpenNotes / Let Patients Help speech, March 2014

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Information at the point where it’s needed can save lives.
  2. 2. “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 HouseWays & Means subcommittee on health, 2004
  3. 3. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  4. 4. Yes, the IOM itself says e-patients are an essential part of tomorrow’s healthcare. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
  5. 5. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  6. 6. From 1972-1975 Peter Frishauf was National Correspondent for The New Physician.
  7. 7. SAMA office, 1972
  8. 8. He met Katharine Rice (aka K.C. Rice) there.
  9. 9. The New Physician at the AMA Convention, 1974
  10. 10. They’ve been rocking ever since, and they say thank you SAMA / AMSA!
  11. 11. And then…
  12. 12. And then…
  13. 13. Frishauf founded Medscape
  14. 14. “Data Liberación!” Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer
  15. 15. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  16. 16. Me? An indicator of the future?? •  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 83% of US adults (Pew) •  Who’s romancing online: –  1999: I met my wife (Match.com) –  2009: One in eight weddings in the U.S. met online –  2011: One in five couples met online
  17. 17. “There’s crap on the internet. We need to get out there and balance it” Wendy Sue Swanson, MD Mother & pediatrician @SeattleMamaDoc Facebook too
  18. 18. •  “The more info we push out, the better decisions they make” •  “We’ve taken a demographic group and through connected technology they’re engaged in their health” •  “Our patients tell their friends – ‘and he’s on Facebook’” An OB/Gyn on social media?? @MacObGyn
  19. 19. ACOR members told me: •  This is an uncommon disease – get to a hospital that does a lot of cases •  There’s no cure, but HDIL-2 sometimes works. –  When it does, about half the time it’s permanent –  The side effects are severe. •  Don’t let them give you anything else first •  Here are four doctors in your area who do it –  And one of them was at my hospital
  20. 20. People perform better when they’re informed better! Who knew??
  21. 21. What if the information they give you is wrong?
  22. 22. Data quality is essential. Let Patients Help.
  23. 23. “Now I know why docs don’t give you scan data. I see theVirgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.” “And this CT scan makes my butt look big.” @Xeni Live tweeting, 12-18-2011
  24. 24. “So I figure out how to open my bone scan data. I look.” “What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!” “I call a hacker pal.‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.” @Xeni Next day: 12-19-2011
  25. 25. Pre-op:“At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”
  26. 26. VA’sVeterans eHealth University, 2012 – audience response: Have you looked in your medical record? Do you know if it has mistakes?
  27. 27. Big data? Whose data?
  28. 28. Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000 Flu vaccine, year 32: 55% doing it, 45% still not Beta blockers, year 18: 62% doing it, 38% still not Diabetic foot care, year 7: 20% doing it, 80% still not Cholesterol, year 16: 65% doing it, 35% still not Creative Commons Attribution / Share-Alike May be distributed with this license included
  29. 29. Scurvy 264

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