BMC Kongress, Berlin, May 2022
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The history of medicine has been a continuous evolution of methods, models, and paradigms as what's possible has changed with new technology. Today the frontier of medicine is "superpatients" - patients who don't just receive care, they literally extend science and create treatments: truly "super" patients. Video of this talk will be available soon!
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BMC Kongress, Berlin, May 2022
- 1. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com Patient Engagement: Participatory Medicine and Personal Health Data Rights
- 2. How I came to be here • High tech marketing: data geek; tech trends; automation • 2007: Cancer discovery & recovery • 2008: E-patient blogger • 2009: Participatory Medicine, public speaking • 2010: Full time • 2011: international • 2012: med schools, advisory, consult • 650 events, 26 countries, 1400 blog posts, 13 universities, 19 articles, 2 book chapters
- 3. Knowledge truly is power. Fundamental Principle #1:
- 4. “We can perform better if we’re informed better”
- 5. When assets digitise, things change fast. Fundamental Principle #2: (Watch for it, and don’t be surprised.)
- 6. Patients are the ultimate stakeholder. Fundamental Principle #3: (They have more “at stake” than anyone)
- 7. Health tech innovation, 19th century style 7
- 8. Rene Laennec (1781-1826) 8 “… experience of its value, that it will be ackare of a temper, and in circumstances, that will enable them to give it a fair trial. John Forbes MD: Translator’s Preface to Laennec’s book: “That it will ever come into general use, notwithstanding its value, I am extremely doubtful; because its beneficial application requires much time, and gives a good deal of trouble both to the patient and the practitioner; and because its whole hue and character is foreign, and opposed to all our habits and associations.” … the first edition
- 9. 1871: Oliver Wendell Holmes “Your patient has no more right to all the truth you know than he has to all the medicine in your saddle-bags. He should get only just so much as is good for him.” Bellevue graduation speech
- 10. Informatics pioneer Dr. Warner Slack, since the 1970s “Patients are the most under- used resource in healthcare”
- 11. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
- 13. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
- 14. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 15. Facing death My mother My daughter
- 16. “My doctor prescribed ACOR” (Community of my patient peers)
- 17. Surgery & Interleukin worked – in six months
- 20. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 21. Answer: Knowledge is power, and access has changed forever
- 22. Because of the Web, patients can connect to information and each other
- 23. Social media: “information capillaries”
- 24. Transformation of Knowledge Access Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at Closed system Open network Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at Transformation of Knowledge Access
- 26. Meet the Superpatients Patients who extend science when all other options are gone
- 27. Superpatient: @DanaMLewis with @ScottLeibrand and the whole #OpenAPS #DIYPS #NightScout crowd
- 29. #OpenAPS (open source): Better control than a working pancreas
- 31. The establishment is always skeptical: “Oh, you mean that wrap invented by that plumber? Oh no, you don’t want that: lots of patients have died and the surgeons are either retired or have lost their license.” Actually …
- 32. “Patient” is not a third person word. Fundamental Principle #4: Your time will come.
- 34. Better data – at home, by myself.
- 37. October 2007 2.8 e-Patient Years in Pictures… December 2006 May 2009
- 39. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com Please: let patients help. Welcome data sharing.
- 40. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com Please: let patients help. What do you see differently now? How can best care be achieved?