Download as PDF, PPTX
![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](https://image.slidesharecdn.com/e-patientdavepfizerpag2017forupload-171123174210/85/Let-Patients-Help-Improve-Everything-including-the-science-36-320.jpg)
Uploaded bye-Patient Dave deBronkart
Let Patients Help Improve Everything - including the science
This document profiles "e-Patient Dave" deBronkart, a patient engagement advocate. It summarizes his journey from a marketing career to becoming a full-time patient advocate after being diagnosed with cancer in 2007. It describes how he utilized online resources and patient communities to help make treatment decisions and find an effective immunotherapy. The document advocates for greater patient empowerment and participation in healthcare, citing examples of highly engaged "e-patients" who are helping to advance medicine through open data sharing and DIY medical innovations.
More Related Content
Similar to Let Patients Help Improve Everything - including the science
Let Patients Help Improve Everything - including the science
- 1. “e-Patient Dave” deBronkart Twitter:@ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Let Patients Help improve everything about care review
- 2. How I cameto 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 • 560+ events, 18 countries, 1400 blog posts, 11 universities, 18 articles, 2 book chapters
- 3. “Patients are the mostunder- used resource in healthcare” Informatics pioneer Dr.Warner Slack, since the 1970s What’s he talking about?
- 4. Evolution of patientpower • Doctor Spock’s Baby and Child Care (1946) • Our Bodies, Ourselves (1973) “We weren’t encouraged to ask questions, but to depend on the so-called experts,” Hawley told Women’s eNews. 1973
- 6. e-Patients.net founder Tom FergusonMD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
- 7.
- 8. Governance: “The truth shallset ye free but first it will piss you off”
- 9. 2007: My “IncidentalFinding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
- 10. Multiple tumors inboth lungs
- 11. E-Patient Activity 1: Researchingmy condition
- 12. Classic Stage IV, Grade 4 RenalCell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 13. After the shock you’releft with the question: What are my options? What can I do?
- 14. Get engaged. Get towork. Do everything you can.
- 15. “My doctor prescribedACOR” (Community of patient peers … see SmartPatients, Inspire.com)
- 16. My patient peerstold me: • This is an uncommon disease – get to a hospital that does a lot of cases • There’s no cure, but HDIL-2 sometimes works. – When it does, about half the time it’s permanent – The side effects are severe. • Don’t let them give you anything else first • Here are four doctors in your area who do it
- 17. Surgery & Interleukinworked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 18. Immunotherapy: To this day nobodyknows why I responded and others don’t.
- 20.
- 21. How can itbe that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 22. Because of theWeb, patients can connect to information and each other
- 23. Social Media: InformationCapillaries
- 24. “These conclusions are nomore anti-doctor or anti-medicine than Copernicus and Galileo ..were anti-astronomer.” Patients can simply contribute more today than in the past.
- 26. Paternal caring “No, honey– you don’t know what you need.” “I’ll take care of you.” Sensible – up to a point “I’ll decide for you.”
- 27.
- 28. Who areTHEY to bepaternalistic??
- 30. After 30 yearsof 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, 2009 Richard Smith 25 year editor of the BMJ
- 31.
- 32. Richard Horton Current editor-in-chief, TheLancet April 2015
- 33. We are witnessing theevolution of scientific certainty and thus authority
- 34. “It’s up tothe doctors to decide which treatments work best”?
- 35. The state of patientengagement today: A puzzle with no agreed paradigm.
- 36. Empowerment “Increasing the capacity ofindividuals or groups to make choices [about what they want] and to transform those choices into desired actions & outcomes” World Bank, 2002
- 37. What do wemean by Engaged? Participating? Derived from Arnstein’s Ladder of Citizen Participation, 1969 Policy wonks may enjoy this discussion of Arnstein’s 8 rungs but I consider the following visualization (by Catherine Gerard, University of Syracuse) more understandable.
- 38. Citizen Participation level1: “Here’s what we’re doing” http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid eshows/Public%20Policy%20Conflict.ppt
- 39. Citizen Participation level2: “What do you think about what we’re doing?” http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid eshows/Public%20Policy%20Conflict.ppt
- 40. Citizen Participation level3: Involving the public in your work http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid eshows/Public%20Policy%20Conflict.ppt
- 41. As gorgeously designed Example ofwhat a difference “consult” makes: here’s a sidewalk created before consulting the citizens. See next slide.
- 42. As gorgeously designed What theywould have asked for if they’d been consulted (Design thinkers call this “desire lines”)
- 43. Citizen Participation level4: Deciding together what to do (and doing it) http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid eshows/Public%20Policy%20Conflict.ppt
- 44. Citizen Participation level5: Citizens calling the shots – full power http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid eshows/Public%20Policy%20Conflict.ppt
- 45. To move peopleup the ladder, empower them: increase their capacity to take effective action.
- 46. It’s perverse to keepsomeone in the dark then say they’re ignorant :-)
- 47. Let’s meet some highlyactivated e-patients of today.
- 48.
- 49. Hugo Campos wantshis ICD data @HugoOC
- 50. Hugo Campos @hugooc HugoOC@gmail.com My firstyear with the AliveCor February 8, 2013
- 52.
- 53. #DIYPS: Open Sourcepancreas! (“Do-it-yourself Pancreas System”
- 54. #OpenAPS users aretweeting
- 55. I’m Alive Thanks to Precision Medicine … and Other Patients © Janet Freeman-Daily2015 -- @JFreemanDaily -- grayconnections.net 55 Stage 3a NSCLC 05/2011 Stage 3b/4 10/2011 Metastatic 09/2012 Clinician No Evidence of Disease since 12/31/2012 chemo- rad Patient chemo rad clinical trial (crizotinib for ROS1 NSCLC) EGFR, ALK neg Submit slides for gene panel Request pathology results Visit U of Colorado Hospital request ROS1/RET tests enroll in clinical trial ROS1 pos 10-gene panel neg travel to site, take meds, labs/scans, track SEs Interact online with lung cancer patients and follow research developments @JanetFD (Janet Freeman-Daily)
- 56.
- 57.
- 58. What’s missing from ourparadigm of patient that makes these ones unexpected???
- 59. Cognitive dissonance setsin: “But my patients aren’t like that.”
- 64. April 1967 (fiftyyears ago): “K. Switzer” runs the Boston Marathon “Get the hell out of my race!”
- 65. Remove constraints andthe future changes 1967 1972 19992017
- 66. 1967 1972 1999 Paradigmerrors è wrong expectations 2017
- 67. At last, thepatient’s view is getting down to the business of drugs development.
- 68.
- 69.
- 74. “Patients are the mostunder- used resource in healthcare” Informatics pioneer Dr.Warner Slack, since the 1970s
- 75. “A new scientifictruth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” Max Planck Nobel Prize, 1918
- 76. William Gibson “The future ishere – it’s just not evenly distributed yet”
- 77. “e-Patient Dave” deBronkart Twitter:@ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Let Patients Help improve everything about care – even the science.