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