The Accessibility of Electronic Personal Health Records for People with Disabiltiies
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Transcript of The Accessibility of Electronic Personal Health Records for People with Disabiltiies
The Accessibility of Electronic Personal Health Records
for People with Disabilities
Dean Karavite, MSICenter for Biomedical Informatics (CBMi)
The Children’s Hospital of Philadelphia (CHOP)
Three Organizations Collaborating on the Project
WGBH, National Center for Accessible Media (NCAM) Pioneer of assistive media technology
Inglis Foundation 135 years managing the care of people with
disabilities Center for Biomedical Informatics, The
Children’s Hospital of Philadelphia Enhancing decision support capabilities of
EMR and PHR in a research setting
The Grant
Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR) 3-Year Field-Initiated Development grant
To develop methods, procedures and rehabilitation technology, that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities, especially individuals with the most severe disabilities; and
To improve the effectiveness of services authorized under the Rehabilitation Act of 1973, as amended.
http://www2.ed.gov/programs/fip/index.html
What Are We Demonstrating?
2 Broad Objectives Promote accessibility awareness and methods Combine accessibility with a user-centered
methods development process Design a PHR
From requirements gathering through iterative design, user testing and final specifications
Share all materials, results, designs, specifications and code
Bonus: Universal Design Requirements of people with disabilities can
lead to more innovative PHRs
W3C Accessibility Demonstrationhttp://www.w3.org/WAI/demos/bad/before/home.html
Two identical sites (in appearance). Which one is accessible?
Year 1 Activities: Requirements
Four activities: Study user population and their
requirements1. Semi-structured interviews 2. Web-based survey
Compare findings to “current state”3. Comparison of findings to
Meaningful Use4. An evaluation of three existing
personal health record (PHR) systems for functionality, usability and accessibility
Semi-Structured Interviews
Purpose: To capture health requirements of people with disabilities 16 subjects in two groups 3 people who are legally blind 13 people with a range of physical and other disabilities
Three open ended questions/discussions Goals
To live independently Education, employment, housing Mobility, transportation, social interaction, retirement
Relationship between health and goals Health fundamental to achieving and maintaining independence
Information, communication and tools to support health Extremely detailed and sophisticated ideas on health information and tools Compiled subject responses into 22 use cases representing health information tasks
More on Use Cases
Categories of responses Information access Information control Communication Education Insurance Equipment
Categories within use case For example, managing medications:
Complete medication history Ability to correct/update meds list Direct access to educational materials
on all meds Linkage to insurance related
information such as available generics and coverage...
Advanced messaging features
7 of 22 Use Cases Derived from Interviews
The PHR will provide access to the complete medical record (all notes, letters, results, measurements, medications, procedures…)
The PHR will allow patients to identify and edit/annotate information in their medical record that is out of date or incorrect
The PHR will allow patients to record and share their treatment goals and concerns with healthcare providers
The PHR will be directly integrated with trusted patient education content and provide context based search directly from the medical record
The PHR will allow patients to view multiple aspects of their medical information over time
The PHR will provide resources and tools to help patients manage insurance related processes (referrals, precertification, appeals...).
The PHR will provide information and tools to help patients manage the acquisition, maintenance, repair and replacement of medical equipment
Survey
Purpose: Validation of the 22 use cases
Methods: Rated each use case in importance
and current satisfaction Information on ability/disability Information on technology use Information on assistive technology
Survey Response
195 people visited, but only 150 of those completed Made sure our survey was accessible: www.surveygizmo.com
Subjects by disability High % people with visual and physical disability Low % of people with hearing disability
Technology use Good computer access, web access… (bias of web survey) Satisfied with technology, but slightly less so with assistive technology
Survey Results: Disability
Physica
l disa
bility
Blind or v
isually
impaire
d
Deaf or h
earing im
paired
Cognitive im
pairment
Speech
difficu
lty
Multiple disa
bilities
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Survey Responses on Disability
Differences Between Disabilities?
We ran comparison tests by disability (Fischer Exact) Of 250+ comparisons, only six with significant results
People with visual impairment: Less satisfied with technology independence Less satisfied with assistive technology access More important to understand information in medical record More satisfied with understanding test results
People with cognitive impairment Less satisfied with ability to contact provider
People with multiple disabilities Less satisfied with ability to contact provider
Meaningful Use Comparison
Stage 2 final and stage 3 proposed rules Five MU policy priorities
Improving quality, safety, and reducing health disparities Engage patients and families in their care Improve Care Coordination Improve population and public health Information Exchange
Overall 16/22 use cases mapped to MU criteria None with an exact match Use cases often exceeded MU in scope and detail
Review of Existing PHR Systems
What is the current state of PHR systems? Functionality Usability Accessibility
Every vendor we contacted about participating in a review of their systems either declined or ignored our communication So, we reviewed three different systems from our own healthcare
1. Hospital2. Clinic3. Consumer
FYI, why no Long Term Care? The vendors of these systems don’t provide PHRs. Inglis was unable to find a single LTC EMR vendor who has addressed patient access.
PHR Assessment Summary
Which PHR Would You Choose?
1. The least functional and usable that was the most accessible2. The most functional and usable that was completely inaccessible3. The PHR with good functionality and usability that was accessible
(except for the most often performed sub-task - entering dates), and is not integrated with your doctor’s system
Answer: None of the above!
If you were able to “meld” the three systems, you'd end up with a pretty nice PHR (functional, usable and accessible)
Conclusion: A more systematic requirements process Integration of usability and accessibility in the development process
Design and Develop
Developing interactive prototypes based on set of use cases
Iterative design Design walkthroughs and usability testing of
people with disabilities Challenges
Common prototyping tools lack accessible code
How do you create “low fidelity” prototypes for people who are blind?
Acknowledgements
Project funded by Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR)
Project team: WGBH: Geoff Freed, Larry Goldberg, Madeleine Rothberg Inglis Foundation: Lea Frontino CHOP: Robert Grundmeier
Backup Slides
Designing for Extreme Users
Rhode Island School of Design, Industrial Design Department Chair, Marc Harrison
Harrison’s universal design approach Design requirements based on the needs of people with
disabilities results in products that are more versatile and efficient for everyone
1978 hired to redesign for home use a processor used in specialized commercial environments Concept to development in 6 months Millions sold, copied by everyone and variants of the
design found in homes today Influenced Steve Jobs and the original Mac
http://www.hagley.org/library/
Collection includes papers of Raymond Loewy and Marc Harrison
Harrison’s Processor
Survey Results: Technology Use
Survey Results: Technology Satisfaction
People with visual disabilities responded as less satisfied to both questions
Very Satisfied Satisfied Neutral Dissatisfied Very Dissatisfied0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Ability to use technology in-dependently
Very Satisfied Satisfied Neutral Dissatisfied Very Dissatisfied0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Having all the assistive technology you need
Differences Between Disabilities?