This document discusses the experiences and perspectives of an ePatient named Erin Gilmer. An ePatient is someone who is equipped, enabled, empowered and engaged in their own health care through online resources and digital technologies. The document outlines Erin's journey of coping with multiple chronic conditions and becoming more involved in her own care management. It also explores how ePatients access health information online, use tools like social media and apps, and want to collaborate as partners with their healthcare providers. Both the opportunities and challenges of new technologies for patients and providers are examined.

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