Talk to Seattle Rotary, Sept. 24, 2014
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The document discusses how Dave deBronkart became an advocate for patient engagement after being diagnosed with cancer in 2007. It outlines his career path from marketing to becoming a full-time patient advocate and speaker in 2010. It emphasizes that patients can provide valuable, timely information to other patients and should be active participants in their own care and in improving the healthcare system.
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Talk to Seattle Rotary, Sept. 24, 2014
- 1. Let Patients Help Heal Healthcare. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com 1
- 2. 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
- 3. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
- 4. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled Doc Tom said, e-Patients are
- 5. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
- 6. My doctor prescribed ACOR (Community of my patient peers)
- 7. 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
- 8. Surgery Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 10. Question:
- 11. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 12. 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.
- 13. 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.
- 14. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
- 15. Death by Googling: Not. (Dr. Gunther Eysenbach, Germany: 0 deaths found in a three year search) Compare with - “To Err is Human” (98,000 deaths/yr Nov 1999) - Inspector General mo
- 16. “It may be more dangerous not to google your condition.”
- 17. “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.
- 18. Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
- 19. “Liquidity” transforms what’s possible
- 20. Not liquid • Moving it takes effort • Slow and predictable • Arrivals on unexplained “tracks” are suspicious Liquid • Frictionless – controlling the flow takes effort • Fast and unpredictable • “Tracks” are everywhere
- 22. Wall Street Journal, June 10
- 23. 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.
- 25. “How can patients participate if they can’t see what I see?” – Dr. Danny Sands
- 26. June 11, 2014 • Patient advisory panel • Patient peer review of research papers • Authors are to document how they involved patients in defining the question and outcome measures
- 27. This movement is a cultural revolution.
- 28. You know it’s a revolution when the artists and musicians show up.
- 29. Regina Holliday’s “Walking Gallery of Healthcare”
- 30. Keith Boone @Motorcycle_Guy “the e-Patient Rap”
- 32. “Gimme My DaM Data”
- 33. Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu# 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%
- 34. Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu# Problem(?) Chronic Disease Epidemic 34 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%
- 35. My classmate Jay
- 36. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
- 37. 0.3% 0.1% 0.2% . . . . . . . . . . . . . . . . . US population 152.3 million 85+: 457k
- 38. 0.5% 0.2% 0.3% . . . . . . . . . . . . . . . . . US population 180.7 million 85+: 904k
- 39. 0.6% 0.2% 0.4% . . . . . . . . . . . . . . . . . US population 205.0 million 85+: 1.23 million
- 40. 1.0% 0.3% 0.7% . . . . . . . . . . . . . . . . . US population 227.2 million 85+: 2.27 million
- 41. 1.2% 0.3% 0.9% . . . . . . . . . . . . . . . . . US population 249.5 million 85+: 2.99 million
- 42. 1.5% 0.5% 1.0% . . . . . . . . . . . . . . . . . US population 282.2 million 85+: 4.23 million
- 43. 1.7% 0.6% 1.1% . . . . . . . . . . . . . . . . . US population 309.3 million 85+: 5.26 million
- 44. 2.0% 0.7% 1.3% . . . . . . . . . . . . . . . . . US population 333.9 million 85+: 6.68 million
- 45. 2.4% 0.9% 1.5% . . . . . . . . . . . . . . . . . US population 358.5 million 85+: 8.60 million
- 46. 3.7% 1.4% 2.3% . . . . . . . . . . . . . . . . . US population 380.0 million 85+: 14.1 million
- 47. 4.4% 1.7% 2.7% . . . . . . . . . . . . . . . . . US population 399.8 million 85+: 17.6 million
- 48. The times call for committed action.
- 49. The lives and well-being of (y)our families are at stake.
- 50. The movement needs competent middle managers.
- 51. At SPM we need capable middle managers to … • Define a deliverable people would find useful – Starter: what would you find useful? • Frame out a plan to make it happen • Pull together a small team to do it • Sit on it until it’s hatched • Iterate to ecstasy!
- 52. Top-of-head project ideas we know would be valuable 1. Create “newbie to-do” tip sheets • “Where do I start? What are my simple to-do’s?” – For patients and for clinicians • Gathering and managing your health records • For docs: how to let patients help
- 53. More top-of-head ideas we know would be valuable 2. Programs for marketers and movement kindlers • Design a public awakening campaign: what would be effective to tell people? • Spread the word – dissemination
- 54. More top-of-head ideas we know would be valuable 3. Programs for data geeks • Data quality awareness and best practices (workflow matters; resilient systems…) • Anything to help (or disrupt) the HIT nerds
- 55. More! top-of-head ideas we know would be valuable 4. Sociology / community • Analyzing what’s happening in the movement and what could be happening • Figure out how some patient communities get great and some don’t. Can we bottle it?
- 56. Do you want to help create this new world?
- 57. Let Patients Help Heal Healthcare. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com 57