On Being an ePatient: Erin M. Gilmer @GilmerHealthLaw [email protected]Equipped, Enabled, Empowered, Engaged
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On Being an ePatient: Erin M. Gilmer @GilmerHealthLaw
[email protected] Equipped, Enabled, Empowered, Engaged
What is an ePatient? Equipped Enabled Empowered Engaged
My Life in Paper
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
Personal Experiences Patient Centered Medical Home at Barbara
Davis Center Research studies Adopting new technologies
Personal Experience Focus on perfectionism Control! Compliance!
Linking to support College!
Randomness and chaos is part of what we do - Dr. Stephen Ponder
(@StephenPonderMD)
Stigma - Barrier or Motivation? Barriers Misinformation
Embarrassment Depression Motivation Want to know the information
& beat the stigma
How I Became Involved JDRF Research Studies Diabetes
Development And Awareness at University of Colorado Twitter
Conferences, PCORI, Nebular Health Tech
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
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)
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
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
Self Trackers/Quantified Self Diabetics are by default
self-trackers As patients its 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)
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
Health IT Changing ePatient Landscape Social Media (Twitter,
Facebook, Online Communities) Online Resources (Research,WebMD,ADA)
New Technologies/Devices (CGMs, Pumps) Apps (Weight/Diet/Glucose
Tracking) EHRs & Patient Portals Telehealth
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
Pew
What do ePatients Share? Treatment information Medications
Technology Personal Stories Stories of other ePatients
Education/Research/News
What resources do ePatients turn to online?
Diabetes Online Community #DOC Diabulimia Helpline
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
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
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)
How to engage and collaborate with an ePatient Clinicians are
the top source of information Need to Educate Collaborate
Coordinate Support
Education - When ePatients Know More Healthcare professionals
cannot become experts in everything Educated ePatients should be
considered part of the healthcare team If ePatients arent 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
EducateThrough Resources Reputable online websites Printed
materials Phone numbers for support groups Apps
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)
Coordinate Patients have multiple providers Be a voice for
patients Encouraging providers to engage with ePatients
ePatients at the Center Primary Care Doctor Me Hospital CDE
Specialist
Support Support Groups Online Communities Mentors Positive
Feedback I want a gold star!!!!
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?
Social Media (Facebook,Twitter, Online Communities) Pros
Support Systems Sharing information Cons Privacy Issues
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
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
Mobile/Web Apps Pros Efficient Low Cost Innovative/Interactive
Cons Too many to consider cannot decide which is best Doctors dont
know them
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
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
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
Telehealth Pros Reaches remote populations Cost efficient Cons
Removed from in-person care that may be needed to address more
serious issues
e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA,
March 2014
e-Patient Dave on OpenNotes / Let Patients Help speech to AMSA,
March 2014
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
As an ePatient I Am Equipped Enabled Empowered Engaged Erin
Erin M. Gilmer @GilmerHealthLaw [email protected]