Authentic Value: Being Known in e-Patient Communities
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The document discusses the rise of participatory medicine and engaged patients connecting online. It describes how the author ("ePatientDave") became involved in online patient communities after being diagnosed with late-stage cancer. It advocates that healthcare professionals engage authentically in online conversations with patients and establish a role as an influencer to provide value to patient communities.
Authentic Value: Being Known in e-Patient Communities
- 1. Authentic Value: Being Known in e-Patient Communities “ e-Patient Dave” deBronkart @ePatientDave e-Patient Connections 2009 October 26, 2009
- 2. How I came to 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: Participatory Medicine 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
- 6. Foundation Principles Patient is 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 Peter Frishauf ’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 Frishauf propose? Reputation systems. (Like Amazon and eBay. Per Esther Dyson’s Release 1.0, October 2003)
- 11. I said “Your time will come.” Mine did. Part 4: Personal Relevance
- 12. The Incidental Finding Routine 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 shock you’re left with the question: What are my options? What can I do?
- 15. Get engaged. Get it 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% for the 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 value is 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) lives and health are at stake.
- 23. The treatment worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 24. What next? The patient becomes an influencer.
- 25. Pay it forward. Start a blog, to teach.
- 26. Write on other blogs.
- 27. Contribute to my hospital’s outreach (They asked me to be in a video)
- 28. Use social media to 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 I outdo them 8^) ) (They gave up on editing the podcasts and just linked to my blog!)
- 30. Use social media to 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. Contribute value. Be known for being real . and contributing value. It’s DTC without the spend. Protect your reputation.
- 33. 2.8 Years in 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: Patient Engagement consulting, speaking, analysis, social media
- 35. Engage Authentically. Earn Love. Be Known. dave@ePatientDave.com @ePatientDave delicious.com/ePatientDave facebook.com/ePatientDave Join the Society: ParticipatoryMedicine.org Read the Journal (free): JoPM.org Submit articles!