On Being an ePatient

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Speech given at the 2014 AADE Texas State Conference

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On Being an ePatient

  1. 1. On Being an ePatient: Erin M. Gilmer @GilmerHealthLaw erin@gilmerhealthlaw.com Equipped, Enabled, Empowered, Engaged
  2. 2. What is an ePatient?  Equipped  Enabled  Empowered  Engaged
  3. 3. My Life in Paper
  4. 4. Why I became an ePatient  Several chronic conditions  Little support from friends and family  In College  Personal struggles with coping  Socioecomic factors (insurance/costs)  Need for control  Personal Interest in health policy
  5. 5. Personal Experiences  Patient Centered Medical Home at Barbara Davis Center  Research studies  Adopting new technologies
  6. 6. Personal Experience  Focus on perfectionism ◦ Control! ◦ Compliance!  Linking to support  College!
  7. 7. Randomness and chaos is part of what we do - Dr. Stephen Ponder (@StephenPonderMD)
  8. 8. Stigma - Barrier or Motivation?  Barriers ◦ Misinformation ◦ Embarrassment ◦ Depression  Motivation ◦ Want to know the information & beat the stigma
  9. 9. How I Became Involved  JDRF  Research Studies  Diabetes Development And Awareness at University of Colorado  Twitter  Conferences, PCORI, Nebular Health Tech
  10. 10. What Quality of Life Improvements Are Most Important? 0 200 400 600 800 Feel less alone Fewer shots Fewer finger pricks Improvement in mental state Less daily hassle Feel in control of my own care Fewer glucose highs/lows Very Important Extremely Important N=654 ©2013 DiabetesMine PatientVoices Survey
  11. 11. Diabetes Intrudes #DayOfDiabetes “Mommy, can you please play with me?” Saying “not yet” is one of the worst parts of low blood sugars. #parenting #dayofdiabetes @Sixuntilme (Kerri)
  12. 12. Characteristics of an ePatient  Looking for information and trying to learn  Collaborate with providers  Share information across platforms  May have 1 or more chronic conditions and be a caregiver
  13. 13. Caregivers are also ePatients  39% of US adults care for a loved one  Includes family and friends  More likely to be a patient themselves ©2013 Pew Research Institute
  14. 14. Self Trackers/Quantified Self  Diabetics are by default self-trackers “As patients it’s not enough that we have to live with the disease itself. We have to live with the data management as well.” - KimVlasnik (Texting My Pancreas)
  15. 15. How Do PatientsTrack?  How do people track in general? ◦ 49% - in their heads ◦ 34% - pencil and paper ◦ 8% - medical device (like glucometer) ◦ 7% - mobile app ◦ 5% - computer program ◦ 1% - websites ©2013 Pew Research Institute
  16. 16. Health IT Changing ePatient Landscape  Social Media (Twitter, Facebook, Online Communities)  Online Resources (Research,WebMD,ADA)  New Technologies/Devices (CGM’s, Pumps)  Apps (Weight/Diet/Glucose Tracking)  EHRs & Patient Portals  Telehealth
  17. 17. ePatients Online  31% of adults with chronic conditions go online to try to figure out what medical condition they or someone else has  1 in 5 internet users have gone online to find patients like them  4 in 10 internet users share personal stories ©2013 Pew Research Institute
  18. 18.  Pew
  19. 19. What do ePatients Share?  Treatment information ◦ Medications ◦ Technology  Personal Stories  Stories of other ePatients  Education/Research/News
  20. 20. What resources do ePatients turn to online?
  21. 21. Diabetes Online Community #DOC Diabulimia Helpline
  22. 22. ePatients Not Just Online  Providers are still by far the most important aspect in patient care  Only 5% receive information online with a healthcare professional or fellow patient ©2013 Pew Research Institute
  23. 23. What Would Most MotivateYou to Put Extra Effort Into D-Management? 0 100 200 300 400 "Gamification" Working in a group/team Having a diabetes mentor Incentive program Positive feedback Likely Very Likely N=609 ©2013 DiabetesMine PatientVoices Survey
  24. 24. Change from Perfectionism to Positivism “Scott was diagnosed withType 1 diabetes in 1970 and grew up expecting to go blind, lose a limb, and probably die before he could graduate college. Nearly 45 years later, he is a father, live-in caregiver for an elderly parent and has suffered from clinical depression for as long as he can remember” - Scott Strange (@Strangely_T1)
  25. 25. How to engage and collaborate with an ePatient  Clinicians are the top source of information  Need to ◦ Educate ◦ Collaborate ◦ Coordinate ◦ Support
  26. 26. Education - When ePatients Know More  Healthcare professionals cannot become experts in everything  Educated ePatients should be considered part of the healthcare team  If ePatients aren’t listened to: ◦ Frustration and Feelings of loss of control ◦ Medication errors and proper resources denied BMJ article “What happens when patients know more than their doctors”
  27. 27. EducateThrough Resources  Reputable online websites  Printed materials  Phone numbers for support groups  Apps
  28. 28. Collaborate – A Colleague in My Care  Ask where the patient is right now and what is most helpful to them  Include in decision making process  Include caregivers  Encourage use of EHRs (and PHRs)
  29. 29. Coordinate  Patients have multiple providers  Be a voice for patients  Encouraging providers to engage with ePatients
  30. 30. ePatients at the Center Primary Care Doctor Me Hospital CDE Specialist
  31. 31. Support  Support Groups  Online Communities  Mentors Positive Feedback I want a gold star!!!!
  32. 32. Considerations when engaging  Health literacy  Cultural influences  Economic influences  At what level do they want to engage?  In what format do they want to engage?
  33. 33. Social Media (Facebook,Twitter, Online Communities)  Pros ◦ Support Systems ◦ Sharing information  Cons ◦ Privacy Issues
  34. 34. Information Dissemination (Websites & Social Media)  Pros ◦ Ability to research anything ◦ Patient forums for support and information ◦ If you lose the pamphlets given to you, you can look it up  Cons ◦ Not always accurate
  35. 35. New Technologies  Pros ◦ Better management ◦ Allows patient to be more engaged ◦ Ease of sharing information electronically  Cons ◦ Expensive ◦ Information Overload ◦ Not all providers up-to-date on technology
  36. 36. Mobile/Web Apps  Pros ◦ Efficient ◦ Low Cost ◦ Innovative/Interactive  Cons ◦ Too many to consider – cannot decide which is best ◦ Doctors don’t know them
  37. 37. EHRs & Patient Portals  Pros ◦ Records accuracy ◦ E-prescribing attributes ◦ Patient portals get test results to patients faster and they can download them  Cons ◦ Frustration by providers ◦ All still in beta form ◦ Portals not very meaningful
  38. 38. PHRs  Pros ◦ Ability to take your information with you wherever you go ◦ Ability to enter in information your doctor might not have  Cons ◦ Do not connect with Patient Portals in EHRs ◦ Doctors may not pay attention to them
  39. 39. Medical Devices  Pros ◦ Connect more and more to other mobile/web apps and EHRs ◦ Ability to track metrics over time  Cons ◦ Security of devices ◦ FDA regulation uncertain
  40. 40. Telehealth  Pros ◦ Reaches remote populations ◦ Cost efficient  Cons ◦ Removed from in-person care that may be needed to address more serious issues
  41. 41. e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA, March 2014
  42. 42. e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA, March 2014
  43. 43. The value of an ePatient  Better management  Greater coordination/collaboration of care  Increased health literacy  Educating and engaging peers and those they care for  Patient Safety
  44. 44. As an ePatient I Am  Equipped  Enabled  Empowered  Engaged Erin Erin M. Gilmer @GilmerHealthLaw erin@gilmerhealthlaw.com

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