e-Patient Dave's talk at NQF Annual Meeting Feb 13, 2014
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Opening to National Quality Forum, on developing quality measures that matter to patients
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e-Patient Dave's talk at NQF Annual Meeting Feb 13, 2014
- 1. Let Patients Help Heal Healthcare JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave
- 2. “I want to note especially the importance of the resource that is most often underutilized 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
- 3. Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
- 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. How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer discovery & recovery • 2008: E-Patient blogger • 2009: Participatory Medicine, Public Speaker • 2010: full time • 2011: international
- 6. Doc Tom said, e-Patients.net founder “e-Patients are Tom Ferguson MD quipped E Engaged Empowered Enabled” 1944-2006
- 7. JAMIA, 1997
- 8. Pt of future
- 9. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
- 10. Multiple tumors in both lungs Where’s This From??
- 11. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
- 12. E-Patient Activity 1: Researching my condition
- 13. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
- 14. 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
- 15. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 17. Question:
- 18. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 19. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
- 20. Dr. Lindberg: 400 years “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” It’s not humanly possible to keep up.
- 21. The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read. During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things.
- 22. Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search) Compare with “To Err is Human” (98,000 deaths/yr Nov 1999)
- 23. “It may be more dangerous not to google your condition.”
- 24. “These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo were anti-astronomer.” Patients can simply contribute more today than in the past.
- 25. Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
- 26. Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
- 28. What Does it Mean to Be Activated ? © 2008 University of Oregon 28
- 29. Ac$va$on Level is Predic$ve of Behaviors Research consistently finds that those who are more ac$vated are: – Engaged in more preven$ve behaviors – Engaged in more healthy behaviors – Engaged in more disease specific self-‐ management behaviors – Engaged in more health informa$on seeking behaviors © 2008 University of Oregon 29
- 30. Ac$va$on is developmental Source: J.Hibbard, University of Oregon © 2008 University of Oregon 30
- 31. Behaviors in Medical Encounter by Ac$va$on Level © 2008 University of Oregon 31
- 32. Can we measure… What the IOM recommends??
- 33. © 2008 University of Oregon 33
- 34. © 2008 University of Oregon 34
- 35. Can we measure… Accurate, careful management of important information?
- 36. @Xeni Live tweeting, 12-18-2011 “Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.” “And this CT scan makes my butt look big.”
- 37. @Xeni Next day: 12-19-2011 “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.”
- 38. 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.”
- 39. Who has the most at stake with the accuracy, completeness and availability of the medical record?
- 40. Data quality is essential. Let Patients Help.
- 41. Can we measure… Dissemination of new knowledge? Patients assume their clinicians know and use the best available methods.
- 42. Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000 Flu vaccine, year 32: 55% doing it, 45% still not Beta blockers, year 18: 62% doing it, 38% still not Cholesterol, year 16: 65% doing it, 35% still not Diabetic foot care, year 7: 20% doing it, 80% still not Creative Commons Attribution / Share-Alike May be distributed with this license included
- 44. Objection: “My patients aren’t like that.” “They aren’t asking for this.”
- 50. That’s why they call it leadership.
- 52. Gorgeous, wonderful new book by Parkinson patients
- 53. Scientists talk about the biology of a disease. Patients talk about living with it.
- 55. Who gets to say what’s important?
- 56. The patient authors of the book
- 57. 2.8 e-Patient Years in Pictures December 2006 October 2007 May 2009
- 60. Let Patients Help Heal Healthcare JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave