"The Changing World Is Enabling New Patient Partnerships"
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This document profiles Dave deBronkart, known as "e-Patient Dave", a cancer survivor and advocate for engaged, empowered patients. It discusses how the rise of the internet and digital connectivity has shifted where medical information and expertise can be found, allowing patients to connect with each other and participate more actively in their own care. It argues that patients should have access to their own clear medical data and notes several examples of how patient engagement and empowerment can improve health outcomes.
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"The Changing World Is Enabling New Patient Partnerships"
- 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com How the Changing World Is Enabling New Patient Partnerships
- 2. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
- 4. 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 • 2011: international
- 5. The issue that’s central to our thoughts today:
- 6. There’s been a profound shift in where competence and information can be found.
- 7. To be wrong about this (or simply out of date) is to be unable to accurately plan for the arriving future.
- 8. Fortunately, it’s not hard to understand what’s newly possible.
- 9. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
- 11. Pt of future
- 13. The Engaged Patient 12 items in my pre-appointment “agenda” email
- 14. The Incidental Finding Routine shoulder x-ray, Jan. 2,2007 “Your&shoulder will&be&fine&… but&there’s& something& in&your&lung”
- 15. Multiple Tumors in Both Lungs Where’s This From??
- 17. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 18. “My doctor prescribed ACOR” (Community of my patient peers)
- 19. ACOR patients 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. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 22. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels? © e-Patient Dave Re-use is permitted with this notice
- 23. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
- 25. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
- 26. 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.
- 27. From the patient’s perspective, what’s important looks different.
- 28. The #FirstMRI movement (2011)
- 30. “How can patients participate if they don’t have the information?” – Dr.Danny Sands
- 31. Who has the most at stake with the accuracy, completeness and availability of the medical record?
- 35. People perform better when they’re informed better.
- 36. It’s perverse to keep people in the dark and call them ignorant Corollary:
- 37. How to start? Here’s the magic incantation
- 38. “I’m the kind of patient who likes to understand as much as I can about my health.”
- 39. “Could I ask some questions?”
- 40. Obstacle to adoption: “But patients don’t understand this stuff.”
- 41. Health literacy
- 42. Health clarity
- 44. If the data’s unclear let’s MAKE it clear Like other industries do.
- 46. Thomas Goetz, Wired “It’s time to redesign medical data”
- 47. Same data – better software. Information: clearer. Consumer: informed, enabled.
- 49. Have you noticed – there are a lot more old people?
- 51. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End ofWorldWar II: ~2.3 billion
- 52. It’s because y’all saved us from dying!!
- 53. My classmate Jay
- 55. The Futile Urge for Certainty
- 56. “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” Dr. Lindberg: 400 years
- 57. 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.
- 58. 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 CommonsAttribution / Share-Alike May be distributed with this license included
- 68. My head hurts. Can we have some fun now??
- 69. When assets digitize, things change fast.
- 70. Today, radiological image data is being used for amazing things.
- 73. 3d print baby’s heart http://3dprint.com/17443/3d-printed-heart-baby/
- 74. 3d print heart for transplant http://news.sky.com/story/1563135/surgeon-uses-3d- printed-heart-to-improve-surgery
- 75. I’m thinking – “Someday, 3D printing will move down market to consumers”
- 81. The obvious question: “That’s cute, but what could anyone really do with it?”
- 82. You never know. That’s the point. Liberate the data!
- 83. Steven Keating
- 84. Googling is a sign of patient engagement!
- 85. Predictably, the empire starts to strike back. It can look ludicrous.
- 89. Meanwhile, evidence grows that the current paradigm is collapsing
- 94. October 2007 2.8 e-PatientYears in Pictures December 2006 May 2009
- 98. It’s great to be alive.
- 99. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Yes, the Changing World Is Enabling New Patient Partnerships