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Authentic Value: Being Known in the e-Patient Community
- 1. Authentic Value: BeingKnown in e-Patient Communities “ e-Patient Dave” deBronkart @ePatientDave e-Patient Connections 2009 October 26, 2009
- 2. How I cameto be here today High tech marketing (TimeTrade Appointment Systems) Online community leader since 1989 Data geek; tech trends; automation 2007: Cancer kicker 2008: E-Patient blogger 2009: Participatory Medicine, Public Speaker
- 3. Part 1: ParticipatoryMedicine John Sharp, Cleveland Clinic: “ If you have not read the e-Patient White Paper, you do not understand the future of medicine.”
- 4. Launched last week: jopm.org @JourPM Journal of Participatory Medicine Taking it “from anecdote to evidence” Peer reviewed for and by providers, patients, and all Open access (free) Co-Editors are a physician and lay editor/patient
- 5.
- 6. Foundation Principles Patientis not a third-person word. Your time will come. “ Patients of the Future” are connecting. Get on the Cluetrain. The old pathways are dying. New ones are growing. Get with it or miss the train. Part 2: The Cluetrain
- 7. Cluetrain Manifesto, 1999: “Markets are Conversations” 30 years ago the “marketing funnel” was this: (Graphics by Forrester) Today’s buyer progresses like this: (This is chaos – you can’t control it. Just gotta jump in and swim with the people.)
- 8. “ Authoritative information”in medicine is changing From JoPM… “ After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.” “ Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant” “ Most of what appears in peer reviewed journals is scientifically weak” Richard Smith, 25 year editor of the British Medical Journal Part 3: Authority is changing
- 9. MedScape founder PeterFrishauf ’s sidebar comment on Smith’s essay: “ If ever there was a case of becoming a vegetarian after working in the slaughterhouse it is that of Richard Smith. “ Better than anyone, Smith uses evidence and experience to demolish any confidence one might still have in traditional medical peer review.”
- 10. What does Frishaufpropose? Reputation systems. (Like Amazon and eBay. Per Esther Dyson’s Release 1.0, October 2003)
- 11. I said “Yourtime will come.” Mine did. Part 4: Personal Relevance
- 12. The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007 “ Your shoulder will be fine … but there’s something in your lung” The shadow was a golf-ball size tumor: kidney cancer that had spread throughout the body
- 13. “ Textbook” Stage IV, Grade 4 Renal Cell Carcinoma My lesions matched the numbered ones on this illustration on Proleukin.com. I added other marks to show where mine were. Just before treatment started, the cancer erupted from my tongue. My Googling said: “ Outlook is bleak” “ Prognosis is grim” “ Median survival: 24 weeks”
- 14. After the shockyou’re left with the question: What are my options? What can I do?
- 15. Get engaged. Getit in gear. Do everything you can. Go “e.”
- 16. E-Patient Activity 1 : Reading (and sharing) my hospital data online
- 17. E-Patient Activity 2:“My doctor prescribed ACOR” (Community of my patient peers)
- 18. Please: 1% forthe patients. Patient communities do a whole lot of good for a little bit of cash. They’re NOT free. Whatever we spend, let’s set aside just 1% to help patient communities help themselves.
- 19. E-Patient Activity 3:My own social support network (CaringBridge.org - family and friends - journal & guestbook)
- 20. Look: genuine valueis being generated outside our perceived ecosystem. Ignore this shift in the ecosystem at your peril. Part 5: Connecting the Dots Engaged patients are also finding value and advice in communities and networks. “Off the radar” Conventional view of healthcare economics is about what providers do (and could do) to create and deliver value
- 21. Think about this:How do you establish an influential role in these e-patient conversations?
- 22. Their (our) livesand health are at stake.
- 23. The treatment worked.Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 24. What next? Thepatient becomes an influencer.
- 25. Pay it forward.Start a blog, to teach.
- 26. Write on otherblogs.
- 27. Contribute to myhospital’s outreach (They asked me to be in a video)
- 28. Use social mediato share info that other patients asked for Driven by patient questions in my ACOR community My idea, not the hospital’s Cost to hospital: $0
- 29. (btw, sometimes Ioutdo them 8^) ) (They gave up on editing the podcasts and just linked to my blog!)
- 30. Use social mediato share info that other patients asked for Driven by patient questions in my ACOR community My idea, not the hospital’s Cost to hospital: $0 Production values: not so hot… but: Authenticity: 100%
- 31. Authenticity drives this.Don’t screw it up.
- 32. Be real. Contributevalue. Be known for being real . and contributing value. It’s DTC without the spend. Protect your reputation.
- 33. 2.8 Yearsin Pictures… December 2006 – dying of cancer and didn’t know it October 2007 – office Halloween party September – the engaged patient becomes a first-time fundrider! my bone surgeon, and my leg with “make-up” May 2009 – with Mom at my daughter’s wedding
- 34. ePatientDave.com: PatientEngagement consulting, speaking, analysis, social media
- 35. Engage Authentically. EarnLove. Be Known. [email protected] @ePatientDave delicious.com/ePatientDave facebook.com/ePatientDave Join the Society: ParticipatoryMedicine.org Read the Journal (free): JoPM.org Submit articles!