Needs, Barriers, and Opportunities Associated with

Using Health IT: a personal Perspective

Accessibility and Usability in Health Information Technology (HIT): A Research and Action Conference to Empower People with Disabilities, Older Adults, and Caregivers

September 17, 2015

Jeromie Ballreich

About me…

• Suffered a spinal cord injury (C4/C5) and near drowning March 13, 2005.• Diagnosed quadriplegia• Quadriplegia makes me an user

of health information technology

About me… now

• PhD student at Johns Hopkins University• Lives with my girlfriend and cat• Require care from multiple

providers on outpatient basis• Require home caregiver• Economist perspective:• $2 million in healthcare expenditure

since my accident

What is Health IT to me?

• My health record• Health history

• Hospitalizations in Miami, Philadelphia, Hershey, Central PA, and Baltimore• Surgical history• Past medications• Past conditions

• Current medications• Current conditions

• Transfers responsibility of remembering and knowing from me and providers to the EHR• Ideally, my EHR can better inform providers

How I currently use Health IT?

• Student at Johns Hopkins University, Baltimore, but is Pennsylvania resident• Johns Hopkins Health System for most health needs, but not ALL• PCP (Geisinger Health System) in Pennsylvania for certain health needs

• Both Hopkins and Geisinger use EPIC, but not integrated• Not integrated within Hopkins• Some specialists/affiliates operate independently• Student health services separate

How I interact with Health IT?

• I can access via online portal, but infrequently…• Review my scripts• Message provider• Schedule/review appointments• See lab results

• Static to dynamic• Regular PCP check-up

• ICD-9 diagnosis (quadriplegia) triggered a bone density scan

• Mychart.hopkinsmedicine • Preventive medicine alert!

My Needs…

• Document information from multiple providers• EHR better reflect my true health record

• Reduce my time filling out health status forms• Focus on the “chronic” part of my condition• Provide me a platform to• LEARN about my health• COMMUNICATE with providers• VIEW my health

My Barriers…

• Not interoperable• Too many systems (health systems, pharmacies, providers)• Too many EHRs for me

• Not fully embraced by all providers• Rarely receive communication from some providers• Rarely discussed or mentioned in visits

• Not integrated with other services• Think outside of traditional healthcare

My Opportunities…

• Integrate day-to-day medical care• Continue to make Health IT a multi-way street• Integrate across other devices

Opportunity: Day-to-day Medical Care (1/2)• Quadriplegia is not my main health

concern, but all the “side effects” are.• “Side effects” requires day-to-day

medical care• Poor circulation, paralysis, and lack

of feeling means I am susceptible to pressure ulcers• Day-to-day medical care starts with

me and my caregiver

Recent heel pressure ulcer May 7, 2015

Opportunity: Day-to-day Medical Care (2/2)• Day-to-day medical care is the responsibility of my caregiver

and I, but we are often not medical professionals• Use Health IT to extend traditional healthcare to the home• Augment day-to-day care with a trusted source of

information• Integrate with insurers and providers• Take the “prescription platform” and extend to all medical

equipment, supplies, and care

Opportunity: Multi-way Street

• Information should go both ways for ALL participants• Example• Imagine uploading a picture of my ankle pressure ulcer• Get timely advice by a provider without going to them physically• Document the “little” issues• Secure and safe

Opportunity: Other devices

• Phones, tablets, computers are all platforms to access Health IT• Devices offer more than just access to a Health

IT system• Document biometrics (watches, other wearables)• Apps can improve creativity and accessibility

• My concern is safety and privacy

THANK YOU!