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?