On Being an ePatient:

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

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What is an ePatient? Equipped Enabled Empowered Engaged

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My Life in Paper

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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

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

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Personal Experience Focus on perfectionism Control! Compliance! Linking to support College!

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

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

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

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What Quality of Life Improvements Are Most Important? N=654 ©2013 DiabetesMine Patient Voices Survey

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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)

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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

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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

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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.” - Kim Vlasnik (Texting My Pancreas)

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How Do Patients Track? 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

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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

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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

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

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What resources do ePatients turn to online?

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Diabetes Online Community #DOC Diabulimia Helpline

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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

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What Would Most Motivate You to Put Extra Effort Into D-Management? ©2013 DiabetesMine Patient Voices Survey

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Change from Perfectionism to Positivism “Scott was diagnosed with Type 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)

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

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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”

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Educate Through Resources Reputable online websites Printed materials Phone numbers for support groups Apps

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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)

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

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ePatients at the Center Primary Care Doctor Me Hospital CDE Specialist

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

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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?

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

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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

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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

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

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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

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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

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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

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

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

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

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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

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