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Authentic Value: Being Known in the e-Patient Community
- 1. Authentic Value: Being Known in e-Patient Communities “ e-Patient Dave” deBronkart @ePatientDave e-Patient Connections 2009 October 26, 2009
- 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.”
- 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
- 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)
- 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)
- 29. (btw, sometimes I outdo them 8^) ) (They gave up on editing the podcasts and just linked to my blog!)
- 31. Authenticity drives this. Don’t screw it up.
- 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!