Public/Consumer speech! e-Patient Dave at Wendy Williamson Auditorium, University of Alaska Anchorage
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My first-ever speech to a NON medical audience - open to the public, the consumer perspective on being an e-patient.
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Public/Consumer speech! e-Patient Dave at Wendy Williamson Auditorium, University of Alaska Anchorage
- 1. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Health & Care
- 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 • 2011: international
- 4. 1969!
- 6. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
- 8. Pt of future
- 9. Me? An indicator of 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 weddings in the U.S. met online – 2011: One in five couples met online
- 10. The Engaged Patient 12 items in my pre-appointment “agenda” email
- 11. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”
- 13. E-Patient Activity 1: Researching my condition
- 14. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 15. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
- 16. 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
- 17. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 20. Question:
- 21. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 22. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
- 23. Paternalistic caring “No, honey – you don’t know what you need.” “I’ll take care of you.” Sensible – up to a point “I’ll decide for you.”
- 25. Empowerment “Increasing the capacity of individuals or groups to make choices [about what they want] and to transform those choices into desired actions outcomes” World Bank, 2002
- 26. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
- 27. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
- 28. OpenNotes What happens when patients see their doctors’ notes?
- 30. • 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
- 31. “My patients aren’t like that.” “They aren’t asking for this.” Objection:
- 36. Get Involved in Your Medical Data. Quality Matters.
- 39. You know it’s a revolution when the artists and musicians show up.
- 40. Ross Martin MD: “e-Patient Dave’s PHR” (Personal Health Record) www.dave.pt/davesphr
- 41. How a kidney cancer wife found the info she needed • No insurance; no treatment.Then: • Three bad hospitals; no help.Then: • A friend said “I know a guy... on Twitter”
- 42. Regina Holliday’s Medical Mural Advocacy Project The Walking Gallery ReginaHolliday.blogspot.com
- 44. 9/12/15
- 45. “Data Liberación!” Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer
- 47. “Gimme My DaM Data” dave.pt/datasong
- 48. October 2007 2.8 e-PatientYears in Pictures December 2006 May 2009
- 50. It’s great to be alive.
- 51. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Health Care