Speech given at the 2014 AADE Texas State Conference

1. On Being an ePatient:
Erin M. Gilmer
@GilmerHealthLaw
erin@gilmerhealthlaw.com
Equipped, Enabled, Empowered, Engaged

2. What is an ePatient?
 Equipped
 Enabled
 Empowered
 Engaged

3. My Life in Paper

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. Personal Experiences
 Patient Centered Medical Home at
Barbara Davis Center
 Research studies
 Adopting new
technologies

6. Personal Experience
 Focus on perfectionism
◦ Control!
◦ Compliance!
 Linking to support
 College!

7. Randomness and chaos is
part of what we do
- Dr. Stephen Ponder
(@StephenPonderMD)

8. Stigma - Barrier or Motivation?
 Barriers
◦ Misinformation
◦ Embarrassment
◦ Depression
 Motivation
◦ Want to know the information & beat the
stigma

9. How I Became Involved
 JDRF
 Research Studies
 Diabetes Development
And Awareness at University of Colorado
 Twitter
 Conferences, PCORI, Nebular Health Tech

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. 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. 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. 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. 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. 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

18. 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

19. 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

20.  Pew

21. What do ePatients Share?
 Treatment information
◦ Medications
◦ Technology
 Personal Stories
 Stories of other ePatients
 Education/Research/News

22. What resources do ePatients turn
to online?

23. Diabetes Online Community
#DOC
Diabulimia Helpline

24. 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

27. 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

28. 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)

29. How to engage and collaborate
with an ePatient
 Clinicians are the top source of
information
 Need to
◦ Educate
◦ Collaborate
◦ Coordinate
◦ Support

30. 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”

31. EducateThrough Resources
 Reputable online websites
 Printed materials
 Phone numbers for support groups
 Apps

32. 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)

33. Coordinate
 Patients have multiple providers
 Be a voice for patients
 Encouraging providers to engage with
ePatients

34. ePatients at the Center
Primary Care
Doctor
Me
Hospital
CDE
Specialist

35. Support
 Support Groups
 Online Communities
 Mentors
Positive Feedback
I want a gold star!!!!

36. 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?

37. Social Media
(Facebook,Twitter, Online Communities)
 Pros
◦ Support Systems
◦ Sharing information
 Cons
◦ Privacy Issues

38. 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

39. 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

40. Mobile/Web Apps
 Pros
◦ Efficient
◦ Low Cost
◦ Innovative/Interactive
 Cons
◦ Too many to consider – cannot decide which
is best
◦ Doctors don’t know them

41. 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

42. 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

43. 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

44. Telehealth
 Pros
◦ Reaches remote populations
◦ Cost efficient
 Cons
◦ Removed from in-person care that may be
needed to address more serious issues

45. e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA, March 2014

46. e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA, March 2014

47. 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

48. As an ePatient I Am
 Equipped
 Enabled
 Empowered
 Engaged
Erin
Erin M. Gilmer
@GilmerHealthLaw
erin@gilmerhealthlaw.com