Let Patients Help - Keynote Address by e-Patient Dave deBronkart


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e-Patient Dave's keynote address at the 2013 Saskatchewan Health Care Quality Summit. For more information about the summit, visit www.qualitysummit.ca. Follow @QualitySummit on Twitter.

E-Patient Dave's presentation, "Let patients help: The most under-used member of the health care team", closed the Summit with a bang and a standing ovation.

Dave deBronkart, a survivor of Stage IV liver cancer, may be the leading spokesperson for the e-Patient movement. E-Patients are Empowered, Engaged, Equipped and Enabled and Expert. They know more about their own health, and their health care experience, than any other member of their care team. Dave shared his own story about becoming an e-Patient, and left us inspired and informed about how to “let patients help” improve health care.

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Let Patients Help - Keynote Address by e-Patient Dave deBronkart

  1. 1. JAMIA, 1997“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com / ePatientDaveLinkedIn.com / in / ePatientDavedave@epatientdave.com Skype: ePatientDaveLet Patients Help
  2. 2. How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery• 2008: E-Patient blogger• 2009: ParticipatoryMedicine, Public Speaker• 2010: full time• 2011: international
  3. 3. “I want to note especiallythe importance of the resourcethat is most often under-utilized in our informationsystems – our patients”Charles Safran MD, Beth Israel Deaconessquoting his colleague,Warner Slack MDTestimony to the HouseWays & Meanssubcommittee on health, 2004
  4. 4. Foundation Principles• Patient is not a third person word– Your time will come– It’s a collective noun.• Patients are the ultimate stakeholder– Yet they’re often omitted from planning the future• A pivotal force:The urge to carefor our children and elders
  5. 5. e-Patients.net founderTom Ferguson MD1944-2006EquippedEngagedEmpoweredEnabled”Doc Tom said,“e-Patients are
  6. 6. JAMIA, 1997
  7. 7. Pt of future
  8. 8. Me? An indicatorof 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 weddingsin the U.S. met online– 2011: One in five couplesmet online
  9. 9. The Engaged Patient12 items in my pre-appointment “agenda” email
  10. 10. The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007“Your shoulderwill be fine …but there’ssomethingin your lung”
  11. 11. Multiple tumors in both lungsWhere’s This From??
  12. 12. PrimaryTumor: Kidney
  13. 13. E-Patient Activity 1:Researching my condition
  14. 14. ClassicStage IV,Grade 4Renal CellCarcinomaIllustration onthe drug company’sweb siteMedian Survival:24 weeks
  15. 15. Facing the Reaper
  16. 16. My mother
  17. 17. My daughter
  18. 18. After the shockyou’re left with the question:What are my options?What can I do?
  19. 19. Get engaged.Get it in gear.Do everything you can.
  20. 20. E-Patient Activity 2:“My doctor prescribed ACOR”(Community of my patient peers)
  21. 21. 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
  22. 22. E-Patient Activity 3:Reading (and sharing)my hospital data online
  23. 23. E-Patient Activity 4:My own social support network(CaringBridge.org - family and friends - journal & guestbook)
  24. 24. E-Patient Activity 5:Tracking my data
  25. 25. Surgery & Interleukin worked.Target Lesion 1 – Left Upper LobeBaseline: 39x43 mm 50 weeks: 20x12 mm
  26. 26. Nice curve!
  27. 27. Question:
  28. 28. How can it bethat the most usefuland relevant andup-to-the-minute informationcan exist outside oftraditional channels?
  29. 29. “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
  30. 30. The lethal lag time:2-5 yearsDuring this time,people who might have benefitted can die.Patients have all the time in the worldto look for such things.The time it takes after successful research is completedbefore publication is completed and the article’s been read.
  31. 31. Because of the Web,Patients Can Connect to Informationand Each Other (and other Providers)
  32. 32. 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)
  33. 33. “It may bemore dangerousnot to google“your condition.”
  34. 34. “These conclusionsare no more anti-doctoror anti-medicinethan Copernicus and Galileo..were anti-astronomer.”Patients can simply contributemore today than in the past.
  35. 35. Web 2.0: “When the web began to harnessthe intelligence of its users.” – Tim O’Reilly
  36. 36. “My patientsaren’t like that.”“They aren’tasking for this.”Objection:
  37. 37. “How can patients participate if they can’tsee what I see?” – Dr.Danny Sands
  38. 38. Lesson learned:People perform betterwhen they’reinformed better.
  39. 39. Obstacle to adoption:“But patientsdon’t understandthis stuff.”
  40. 40. It’s perverseto keep peoplein the darkand call them ignorantCorollary:
  41. 41. If the data’s unclearlet’s MAKE it clearLike other industries do.
  42. 42. Thomas Goetz, Wired
  43. 43. Thomas Goetz, Wired“It’s time to redesign medical data”
  44. 44. Same data –better software.Information: clearer.Consumer:informed, enabled.
  45. 45. Psoas muscle(My kidney tumor was encroaching on it) my rendering onVisibleBody.com
  46. 46. Why not “Google Earth for my body”?
  47. 47. OsiriX
  48. 48. Dr. EricTopol
  49. 49. iPhone EKG??12/3/12:“FDA clears iPhone heartmonitor, doctors can pre-order”
  50. 50. Who gets to say what valueis, in the first place??
  51. 51. You knowit’s a revolutionwhen…
  52. 52. How a kidney cancer wifefound the info she needed• No insurance;no treatment.Then:• Three bad hospitals;no help.Then:• A friend said“I know a guy...onTwitter”
  53. 53. Regina Holliday’sMedical Mural Advocacy ProjectThe Walking GalleryReginaHolliday.blogspot.com
  54. 54. Information makes a difference.
  55. 55. And finally:recognitionfrom theestablishment
  56. 56. Institute of Medicine – Sept 2012Major New Report:“Best Care at Lower Cost”
  57. 57. Yes, the IOM itselfsays e-patients are anessential part oftomorrow’s healthcare.Patient-Clinician PartnershipsEngaged, empowered patients—A learning health care system isanchored on patient needs andperspectivesand promotes the inclusion of patients,families, and other caregivers as vitalmembers of the continuously learningcare team.
  58. 58. October 20072.8 e-PatientYears in Pictures…December 2006 May 2009
  59. 59. JAMIA, 1997“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com / ePatientDaveLinkedIn.com / in / ePatientDavedave@epatientdave.com Skype: ePatientDaveLet Patients Help
  60. 60. JAMIA, 1997“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com / ePatientDaveLinkedIn.com / in / ePatientDavedave@epatientdave.com Skype: ePatientDavee-Patients Can HelpImprove Healthcare
  61. 61. Case Study #3:Hugo Campos wants his ICD data
  62. 62. Full,unrestricted& convenientaccess.Doctor Experience
  63. 63. Patient Experience
  64. 64. $99ActivityFitbit
  65. 65. $129Blood PressureWithings BP Monitor
  66. 66. WeightWithings WiFi Scale$159
  67. 67. $149SleepZeo Sleep Manager
  68. 68. No dataImplantedCardiacDefibrillator$30,000
  69. 69. Raw data
  70. 70. JAMIA, 1997
  71. 71. Dutch IVF programhad an insane idea• Give patient couplesa wiki, and six monthsto talk amongst them-selves.The promise:• “We’ll give you anythingyou decide – your topten choices. Unedited.”
  72. 72. Top things IVF patients asked for• I want insurers to reimburse six attempts.• I want insurance companies to only count itif a puncture or a replacement has taken place.• I want empathy from my doctor,not just technical or financial information.• I want separate waiting rooms for pregnant womenand patients with a fertility treatment• I want more time to make an appointment,even in the evening.
  73. 73. “Data Liberación”Todd ParkInnovatorEntrepreneurHHS ChiefTech OfficerUS ChiefTech Officer
  74. 74. How to start?Here’s themagic incantation
  75. 75. “I’m the kind of patientwho likes to understandas much as I canabout my health.”
  76. 76. “Could I asksome questions?”
  77. 77. Obstacle to adoption:“Patients willflood us withtime-wastingquestions.”
  78. 78. OpenNotesWhat happenswhen patients seetheir doctors’notes?
  79. 79. Announced this past Monday
  80. 80. • 99% of patients wanted to continue• 17-26% of docs preferred not to…–But when given the chance to stop, nonedid• 85-89% of patients said availability ofopen notes would influence theirchoice of providers and health plans