Accessible Health Information Technology: AAPD Testifies to HHS
On April 21, 2011, AAPD's Senior Director for Government Affairs Jenifer Simpson testified to a federal advisory committee on the need for accessible and usable health information technology. This federal committee was formed by the Office of the National Coordinator for Health Information Technology at Health & Human Services (HHS-ONC). The “Hearing on Usability” included one panel on "Consumer Perspectives" where AAPD testified. This panel included several consumer groups raising concerns about the lack of a consumer or patient focus as health information technology advances. With health care reform being implemented at the federal, state and local levels, there’s much work going on to increase the amount of information technology (IT) used by health care providers and patients. Committee members listening included the newly appointed HHS National Coordinator for Health Information Technology, Farzad Mostashari, MD, ScM.
AAPD’s perspective is both from the needs of health care consumers and for health care workers using these systems, and who may have disabilities. These electronic systems may involve Electronic Medical Records (EMRs) or Electronic Health Records (EHRs) or consumer Personal Health Records (PHRs), all of which can be part of the health care service delivery infrastructure. With 20% of the U.S. economy involved in health care, we all want to be sure these IT systems work for all users, whether patients or employees of health care delivery services.
At the hearing: AAPD's statement focused on usability for people with disabilities of EHRs and the need for more effort to be made to raise consumer awareness about electronic health records. AAPD commented on the need for accessibility and usability, that accessibility and usability are separate notions, on the need for security and privacy in electronic medical recordkeeping for people with disabilities who can face discrimination based on disability and medical status, and how consumers with disabilities see themselves as the “owners” wanting to control their own medical information.
There was considerable discussion at this HHS hearing about electronic health records currently in use at many hospitals and medical practices. It became clear that many health care providers, including doctors, nurses and other clinicians are not happy with the current status of EHR usability. They said things like “it takes too long to enter data”, “we want less clicks and screens to wade through,” “we can’t find the right screen,” or “we don’t do usability well in team-based care as we often can’t find the critical data.” Interestingly, several of the nursing and clinician statements on usability focused on how they believe EHR systems do not reflect the typical “work flow process” of health care workers and clinicians. Others raised concerns about how to pay for the time implementing and using these systems.
Dr. Stanley Wienapel, a physiatrist who is blind, and a member of the National Federation of the Blind, testified about his concerns that new systems would not work with his screen reader system (JAWS) and the optical character reader (OCR) system he uses for reading medical literature. He also mentioned the needs of wheelchair users and others with physical disabilities in accessing IT equipment.
Advocacy Action:
1. Read the April 21 HHS ONC “Usability hearing” witness statements online at http://healthit.hhs.gov/portal/server.pt?open=512&objID=1473&&PageID=17117&mode=2&in_hi_userid=11673&cached=true#042111
2. Take a few minutes to comment today about accessibility and usability for people with disabilities in another health information technology open docket. This is the Federal Strategic Plan for Health Information Technology at http://healthit.hhs.gov/portal/server.pt?open=512&objID=1211&parentname=CommunityPage&parentid=2&mode=2, comment period closes May 6. For instance, provide examples of access barriers you have encountered and/or recommend strategies for change such as adoption of Section 508 Information Technology accessibility standards or WCAG 2.0 website standards, etc.
3. For a copy of AAPD’s statement, or for further information, send email to [email protected] with “health information technology” in the subject line.
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