Improving Health IT by Learning from Users with Disabilities Madeleine Rothberg National Center for Accessible Media at WGBH September 18, 2015

© 2015 WGBH 2

Media Access at WGBH The Caption Center (est. 1972) IF YOU HOLD THE BIRD LIKE THIS, IT CAN’T FLY OUT OF THE KITCHEN. Descriptive Video Service (est. 1990) © 2015 WGBH 3

Digital TV Theme parks Web meetings Online Multimedia Online Assessments Museums © 2015 WGBH 4

Health IT: Access to PHRs © 2015 WGBH 5

Barriers to Accessible Health IT AT images Photo credits: Yahoo! Accessibility Lab, cobalt123, Glenda Sims, ingoism, Robert Murphy. © 2015 WGBH 6

Accessible Designs for Personal Health Records  Carl and Ruth Shapiro Family National Center for Accessible Media at WGBH (NCAM): Madeleine Rothberg; Geoff Freed  The Department of Biomedical and Health Informatics, The Children's Hospital of Philadelphia: Dean Karavite  Inglis, Philadelphia, PA: Lea Frontino US Dept. of Ed NIDRR Field Initiated Project H133G © 2015 WGBH 7

Accessibility review of current PHRs PHRs for outpatient clinic, hospital, and consumer Demonstrate disparity and variability in achieving accessibility, usability and functionality Can be easy to use, but inaccessible — or difficult to use, yet fully accessible Have accessibility issues that can be readily addressed Are only beginning to provide the information, resources and tools required to help consumers manage their own health and healthcare © 2015 WGBH 8

Talk to users  Semi-structured interviews (16 consumers) — Most important goal: independence — What health IT tools would support your goals? — Resulted in 22 requirements  Web-based survey (150 consumers) — Confirmed importance of requirements  Extensive user testing of a prototype PHR (26 consumers) © 2015 WGBH 9

Initial Findings People with disabilities: Are high-volume consumers of health care Are sophisticated consumers of health care Are not satisfied with current non-PHR tools for managing health care Described technology innovations that map well to governmental standards for health IT Would benefit greatly from a usable and accessible PHR © 2015 WGBH 10

Importance/ Satisfaction Consumers told us that a wide range of health care tasks are important, and current options are unsatisfactory.. © 2015 WGBH 11

Learning from Users with Disabilities Usability testing with users with disabilities taught us the value of relevance. © 2015 WGBH 12

Prototype Scenarios  Scenario 1: Preferences  Scenario 2: Equipment  Scenario 3: Medications  Scenario 4: Care Plan  Scenario 5: Lab Results © 2015 WGBH 13

Usability Testing Formative Testing  Rapid iteration  Low cost PHR mockups shown to people with different disabilities  Discovered issues that would have been difficult and expensive to address in functioning prototypes © 2015 WGBH 14

Usability Testing, cont. Hands-on Iterative Testing  Tested and refined the prototype iteratively  Testing with blind users uncovered errors in code accessibility; once those were corrected satisfaction improved.  Testing with Deaf users uncovered the need for education materials in ASL; once those were provided, satisfaction improved. © 2015 WGBH 15

Feedback What did you like LEAST about the system? “Nothing, except I wish it was mine.” More user testing feedback on the Web site: © 2015 WGBH

How did we build it?  Entire prototype is available on the Web site  Code samples for accessibility © 2015 WGBH 17

Features: Equipment inventory © 2015 WGBH 18

Features: Relevant resources © 2015 WGBH 19

Code Sample: Icons and Text Resources Add/Edit How to Use a Hoyer Lift (external link) … © 2015 WGBH 20

Code Sample: Navigation Navigation markup makes a complex site easier to use for assistive technology users.  Most document areas (header, section) use aria-labelledby to associate them with a visible heading.  Navigation elements have been labeled with role="navigation" for cases where the browser does not establish the appropriate landmark role based on the nav element alone.  To address a bug in older versions of some screen readers where headings nested inside sections have their levels increased by one, aria- level is specified and the section's role is assigned as presentation. © 2015 WGBH 21

Code Sample: Navigation Your Personal Health Record Preferences Account Logout © 2015 WGBH 22

Code Sample: Information Links Levothyroxine © 2015 WGBH 23

Steps to Accessible Health IT  Talk to users  Create valuable features  Use accessible coding techniques  Provide accessible multimedia  Test – test – test! © 2015 WGBH 24

Contact Information Madeleine Rothberg © 2015 WGBH 25