NCQA-RIQI Pt Centered Medical Home event 7-23-14 (with font problem)

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Keynote at NCQA's Medical Home Summit, July 2014. - I'll try to fix the font & layout problem - Microsoft doesn't allow "embed custom fonts" in Mac Powerpoint - sometimes it works, sometimes it doesn't! Grr...

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NCQA-RIQI Pt Centered Medical Home event 7-23-14 (with font problem)

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Engaging Patients in Their Health and Their Care 1
  2. 2. Disclosures • Advisory consulting on Patient Perspective: TrialReach, TRON
  3. 3. How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer discover & recovery • 2008: E-Patient blogger • 2009: Participatory Medicine, Public Speaker • 2010: full time
  4. 4. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…” 5
  5. 5. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled e-Patients are
  6. 6. Pt of future
  7. 7. Me? An indicator of the future?? • Who’s getting online: – 1989: Me (CompuServe sysop) – 2009: 76% 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
  8. 8. The Engaged Patient 12 items in my pre-appointment “agenda” email
  9. 9. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
  10. 10. Multiple tumors in both lungsWhere’s This From??
  11. 11. Primary Tumor: Kidney
  12. 12. E-Patient Activity 1: Researching my condition
  13. 13. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
  14. 14. Facing the Reaper
  15. 15. My mother
  16. 16. My daughter
  17. 17. After the shock you’re left with the question:What are my options? What can I do?
  18. 18. Get engaged. Get it in gear. Do everything you can.
  19. 19. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
  20. 20. 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
  21. 21. E-Patient Activity 3: Reading (and sharing) my hospital data online
  22. 22. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  23. 23. Question:
  24. 24. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  25. 25. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  26. 26. “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. Dr. Lindberg: 400 years
  27. 27. The lethal lag time: 2-5 years During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.
  28. 28. Compare with “To Err is Human” (98,000 deaths/yr Nov 1999) Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
  29. 29. “It may be more dangerous not to google your condition.”
  30. 30. “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.
  31. 31. Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
  32. 32. “My patients aren’t asking for this.” Objection:
  33. 33. “My patients aren’t at all engaged.” Problem:
  34. 34. Are you??
  35. 35. Peter Elias, MD (Maine) “When my wife wants me to help pick carpet for remodeling the grown son’s bedroom and hall, I truly do not WANT to do anything and do not WANT to be involved, so I am always in the market for new and more convincing ways to say
  36. 36. Peter Elias, MD (Maine) “I love what my auto mechanic does. ‘Hey doc. Your snow tires aren’t looking so good. Do you have a preference for brand or price, or do you want me to just give you a couple good options and my recommendation?’”
  37. 37. Peter Elias, MD (Maine) “I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is tohelp them reach their health goals,
  38. 38. Peter Elias, MD (Maine) “I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is tohelp them reach their health goals, and the ability to be minimally involved can be one of their health goals.
  39. 39. Prochaska’s Transtheoretical Model
  40. 40. Hibbard’s PAM (Patient Activation Measure)
  41. 41. Models of Engagement, Activation and Change • TTM (Prochaska) • Patient Activation Measure (Hibbard) • Motivational Interviewing (Miller & Rollnick) • CDSMP (Lorig)
  42. 42. How engaged are YOU?
  43. 43. Patients have the most at stake with the accuracy, completeness and availability of the medical record
  44. 44. Wall Street Journal, June 10
  45. 45. It’s perverse to keep people in the dark then call them ignorant.
  46. 46. “How can patients participate if they can’t see what I see?” – Dr. Danny Sands
  47. 47. OpenNotes What happens when patients see their doctors’ notes?
  48. 48. • 99% of patients wanted to continue • 17-26% of docs preferred not to… –But when given the chance to stop, none did • 85-89% of patients said availability of open notes would influence their choice of providers and health plans 57
  49. 49. Dr. Eric Topol
  50. 50. AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre- order”
  51. 51. Urgency: The Demographic Crunch
  52. 52. Problem(?) Chronic Disease Epidemic CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of Death Jones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
  53. 53. Problem(?) Chronic Disease Epidemic CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of Death Jones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
  54. 54. My classmate Jay
  55. 55. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  56. 56. At last: recognition from the establishment
  57. 57. Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
  58. 58. 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.
  59. 59. June 11, 2014 Announced – • Patient advisory panel • Patient peer review of research papers • Authors are to document how they involved patients in defining the question and outcome measures www.bmj.com/content/348/bmj.g3726
  60. 60. William Gibson “The future is here – it’s just not evenly distributed yet”
  61. 61. October 2007 2.8 e-Patient Years in Pictures… December 2006 May 2009
  62. 62. This month – first birthday
  63. 63. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Engaging Patients in Their Health and Their Care 74

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