From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
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High speed talk to developers at the annual FHIR* Developer Days conference in Amsterdam. The world of health data migration is advancing very rapidly, and the time has come to call for developers to let PATIENTS have full access to every kind of data they need. * FHIR = Fast Healthcare Interoperability Resources FHIR.HL7.org
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From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
- 1. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW.
- 2. “Patient” is not a third person word. Fundamental Principle: Your time will come.
- 3. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your shoulder will be fine … but there's something in your lung
- 4. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 5. My doctor prescribed ACOR (Community of my patient peers)
- 6. Surgery & Interleukin worked
- 10. You know it’s a revolution when the artists and musicians show up.
- 14. I assert: our paradigm of patient is broken, and it’s holding back progress
- 15. A question that reveals a paradigm error: “This stuff is hard! … What could people contribute who don’t have that training??”
- 16. Try us.
- 17. Our ability to create solutions of our own is primarily limited by lack of data
- 18. @KatieMcCurdy Illustrator / patient, 2012
- 21. @DanaMLewis
- 24. #DIYPS: Open Source pancreas! (“Do-it-yourself Pancreas System”
- 25. #OpenAPS users are tweeting
- 26. #OpenAPS users are tweeting
- 28. Knowledge (including data) truly is power.
- 29. 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
- 30. It’s perverse to keep someone uninformed then say “They seem ignorant!”
- 31. A common objection: “OK, Dave, you’re like that, but the patients I know aren’t asking for this.”
- 32. This has strong parallels with what men used to think about women.
- 34. That’s clearly a mental error.
- 35. April 1967 (fifty years ago): “K. Switzer” runs the Boston Marathon “Get the hell out of my race!”
- 36. Remove constraints & what’s possible changes 1967 1972 19992017
- 37. 1967 1972 1999 Paradigm errors è wrong expectations 2017
- 39. We demand a MEDICAL RECORD SPIGOT! It’s all about ME, so it’s MINE! Take action: bit.ly/healthspigot Give us ALL our data and WE’LL decide what to do with it.
- 40. In other words…
- 41. Get out of our way.
- 42. J
- 43. Some “innovator” patients are already doing it the hard way.
- 44. Kate Sheridan – nasty Lyme case •30 doctors •15 diagnoses •From star student to unable to read a single page
- 45. • “Printouts over a foot high ... typed it into Excel. • “We took her lab data, her medication treatment timelines… But there was more to it. She had 26 symptoms. • “We started tracking their severity. Our spreadsheet had not just clinical data but her patient data. • “We also added for each of those trials how she’d responded.”
- 47. Kate’s view • “I can’t tell you how powerful it is to be able to hold that journey in my hands. • “There are many patients out there who have far crazier stories …but who do not have the tools to share them. I am asking you to help us change that.”
- 48. Michael Morris - Stage IV colorectal (liver, lungs)
- 49. Michael Morris - Stage IV @CureSoft with FHIR “I’m using my data across multiple hospitals to put together an integrated solution to manage my care with my care team.”
- 52. Enable achievement by the person in trouble.
- 53. Enable a patient-side app ecosystem that can blossom in directions of its own.
- 56. You can’t handle nicholson You can’t HANDLE the Helvetica!
- 63. Enable a patient-side app ecosystem that can blossom in directions of its own.
- 64. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW.