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The Accessibility of Electronic Personal Health Records for People with Disabiltiies

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Presentation from accepted abstract at the Human Factors and Ergonomic Society (HFES), Healthcare Symposium, 2013

Publicado en: Tecnología, Diseño
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The Accessibility of Electronic Personal Health Records for People with Disabiltiies

  1. 1. The Accessibility of Electronic Personal Health Records for People with Disabilities Dean Karavite, MSI Center for Biomedical Informatics (CBMi) The Children’s Hospital of Philadelphia (CHOP)
  2. 2. 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. 
  3. 3. 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
  4. 4. W3C Accessibility Demonstration Two identical sites (in appearance). Which one is accessible?
  5. 5. Year 1 Activities: Requirements  Four activities:  Study user population and their requirements 1. Semi-structured interviews 2. Web-based survey  Compare findings to “current state” 3. Comparison of findings to Meaningful Use 4. An evaluation of three existing personal health record (PHR) systems for functionality, usability and accessibility
  6. 6. 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
  7. 7. 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
  8. 8. 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
  9. 9. 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
  10. 10. Survey Response  195 people visited, but only 150 of those completed  Made sure our survey was accessible:  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
  11. 11. Survey Results: Disability 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Physical disability Blind or visually impaired Deaf or hearing impaired Cognitive impairment Speech difficulty Multiple disabilities Survey Responses on Disability
  12. 12. 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
  13. 13. 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
  14. 14. 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. Hospital 2. Clinic 3. 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.
  15. 15. PHR Assessment Summary
  16. 16. Which PHR Would You Choose? 1. The least functional and usable that was the most accessible 2. The most functional and usable that was completely inaccessible 3. 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
  17. 17. 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
  18. 18. Backup Slides
  19. 19. 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 Collection includes papers of Raymond Loewy and Marc Harrison
  20. 20. Harrison’s Processor
  21. 21. Survey Results: Technology Use
  22. 22. Survey Results: Technology Satisfaction People with visual disabilities responded as less satisfied to both questions 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Very Satisfied Satisfied Neutral Dissatisfied Very Dissatisfied Ability to use technology independently 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Very Satisfied Satisfied Neutral Dissatisfied Very Dissatisfied Having all the assistive technology you need
  23. 23. Differences Between Disabilities?