Healthcare Systems are Starting to Listen
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This document discusses the empowerment of patients through access to online health information and connections with other patients. It describes how e-patients, or engaged and empowered online patients, are becoming recognized as important partners in healthcare. The story of a patient who was able to access information from other patients online and find better treatment options for his rare form of cancer is provided as an example of how online connections can benefit patients.
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Healthcare Systems are Starting to Listen
- 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Healthcare Systems are Starting to Listen 1
- 2. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
- 4. IOM 2012 report “Best Care at Lower Cost” says e-patients are an essential part of tomorrow’s healthcare. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
- 5. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”
- 6. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
- 7. “My doctor prescribed ACOR” (Community of my patient peers)
- 8. ACOR patients told 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 – And one of them was at my hospital
- 9. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
- 12. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
- 13. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
- 14. Closed system Open network Transformation of Knowledge Access Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
- 17. When assets digitize, things move fast.
- 23. Case Study: Hugo Campos wants his ICD data
- 26. Dr. EricTopol
- 27. AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC
- 28. Hugo Campos @hugooc HugoOC@gmail.com My first year with the AliveCor February 8, 2013
- 29. People perform better when they’re informed better.
- 30. “How can patients participate if they don’t have the information?” – Dr.Danny Sands
- 31. What do we mean by Empowered?
- 32. 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
- 33. Empowerment “An empowering approach to participation treats poor people as co-producers with authority and control over decisions and resources devolved to the lowest appropriate level.”
- 34. Empowerment “An empowering approach to participation treats patients as co-producers with authority and control over decisions and resources devolved to the lowest appropriate level.”
- 35. Paternalistic 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.”
- 43. IOM “Best Care at Lower Cost” says e-patients are an essential part of tomorrow’s healthcare. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
- 44. It’s great to be alive.
- 45. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Healthcare Systems are Starting to Listen 45