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To HHS on Certification Criteria for Health Record Technology

March 15, 2010

 

Office of the National Coordinator for Health Information Technology

Department of Health & Human Services

Reference: RIN 0991-AB58

 

Comment on the on Health Information Technology: Initial Set of Standards, Implementation Specifications, and Certification Criteria for Electronic Health Record Technology (Federal Register, Interim final rule, January 13, 2010)

 

Dear Coordinator:

            The American Association of People with Disabilities (AAPD) is pleased to offer some brief comments on this proposed rule.  

            AAPD is the largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for more than 50 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973, in addition to other statutes, such as those related to health care and technology.

            AAPD is one of the few disability advocacy groups with a dedicated project, the Telecommunications & Technology Policy Initiative (TTPI) initiated in 2006, focused on accessibility and usability of technology infrastructures for people with disabilities. To that end, AAPD has an overarching Policy Resolution on Technology for Persons with Disabilities that acknowledges that accessibility and usability are critical, and affordability is essential, for the full inclusion of persons with disabilities. See Appendix A.

            AAPD remains deeply concerned that accessibility and usability for people with disabilities appears to have been overlooked as a topic in the Federal or national HIT agenda; i.e., neither in this Federal Register Notice nor as part of the recommendations made by the HIT Standards Committee, nor in the ONC HIT Strategic Plan on nationwide implementation of interoperable HIT for the private and public sectors. In 2008 AAPD raised this issue with the Acting National Coordinator for HIT (Rob Kolodner) and we were assured that several steps would be taken including accessibility standards in accordance with Sections 503 and 508 of the Rehabilitation Act and that any Personal Health Records (PHRs) offered via HHS would “be developed to accommodate technological applications that can be used by persons with disabilities.” See Appendix B for an HHS Email response to our Letter of Concern.

            We are specifically responding to the section in the Federal Register notice requesting public comments “…on whether specific certification criteria could be adopted to further promote the capabilities Certified EHR Technology should provide with respect to meeting the accessibility needs of individuals with disabilities”.

 

Accessibility Should be a High Priority

            AAPD asserts that standards for accessibility and usability should be applied to Certified EHR Technology and elevated as a very high priority, comparable to standards for security, privacy, confidentiality, transport and exchange. Furthermore, since interoperability will be essential to these standards we would expect no barriers to accessibility and usability as content is passed through networks and systems, i.e., the goal should be “accessible once, always available later.”

            The accessibility and usability of HIT is of grave concern to people of diverse disabilities, including people with vision, hearing, intellectual, manual dexterity, mental health, developmental and other disabilities. This is not only a concern for people with disabilities who are health care consumers as well as their families, but also includes professionals, administrative employees, clinicians, researchers and other staff delivering health care or involved in health care administration and who might have disabilities, or, who may become disabled while on the job. Likewise, students with disabilities in training to become healthcare professionals need to have accessibility and usability in the tools they use as part of their educational experiences or they would be receiving second class education experiences if they cannot access materials that may be in digital or other “electronic” formats. 

            Our concerns center on the potential for creation of barriers to use when design, development, fabrication and deployment of EHR systems are not mindful of the accessibility and usability needs of the largest number of users. For example, we are concerned about interoperability across systems and the potential for user interfaces that create dependence on others such as for users with vision disabilities. 

 

Electronic Health Records Systems Broad in Scope

            AAPD envisions the full range of technology as part of health information technology such as websites, software, computers, hand-held wireless devices, videos, user applications, and emerging technologies incorporated in our growing broadband world. However, we believe there are already existing guidelines and standards that HHS could be used for establishing standards as EHR technology evolves within the health information technology ecosystem:

a.       There are the Web Content Accessibility Guidelines (WCAG 2.0) of the W3C Web Accessibility Initiative (WAI) for website accessibility.

b.      There are the Electronic and Information Technology Accessibility Standards (commonly referred to as “the Section 508 Standards”) developed by the U.S. Access Board. These are developed through a process that involves industry, government, consumers, international representatives and others and are therefore both broad in scope and in depth. AAPD notes that federal agencies are required to follow the Section 508 Standards in order to comply with Section 508 of the Rehabilitation Act. Furthermore, the 508 Standards may be used by non-federal entities as well as a way to show commitment and leadership to making technology accessible and usable for people with disabilities. These guidelines and standards are well known and there is over a decade of experience in using them.

c.       There are standards for telecommunications services providers and equipment in the Communications Act at Section 255. Rules at 49 CFR Part 6, Access to Telecommunications Service, Telecommunications Equipment and Customer Premises Equipment by Persons with Disabilities, provide extensive requirements on how to design and develop for disability accessibility and usability. Similarly, rules at 49 CFR Part 7, Access to Voicemail and Interactive Menu Services and Equipment by People with Disabilities, provide extensive operational requirements to ensure such interfaces work for people with disabilities.

 

AAPD Priority Recommendations for the Initial Set of Standards, Implementation Specifications, and Certification Criteria for Electronic Health Record (EHR) Technology

A.    HHS incorporate the type of disability accessibility and usability found in the guidelines and standards referenced above. Given that the private sector is already familiar with these sets of requirements, this would provide consistency and a level playing field for all.

B.     HHS clarify and confirm that these disability accessibility standards also apply to EHR technology both inside and outside of federal sector purchase. Given that the private sector is deeply involved in developing the technologies, this would provide consistency and a level playing field for all.

C.     HHS begin a substantive effort to expand awareness and education about Electronic Health Record Technology in the disability community to forestall current perceptions in our community that these concerns are not being addressed.

            AAPD appreciates this opportunity to comment on the interim final rule initial set of standards for implementation specifications and certification criteria for electronic health record technologies.

 

Sincerely,

 

      Jenifer Simpson

 

Jenifer Simpson

Senior Director, Telecommunications & Technology Policy Initiative

Government Affairs

 

 

American Association of People with Disabilities

1629 K Street NW, Suite 950 • Washington, DC 20006

phone 202-457-0046 (V/TTY) • 800-840-8844 (V/TTY) • fax 202-457-0473 • www.aapd.com


 

 

APPENDIX A

 

AAPD POLICY RESOLUTION ON TELECOMMUNICATIONS AND TECHNOLOGY FOR PERSONS WITH DISABILITIES

 

Given that telecommunications and technology are fields that are rapidly changing, and this will impact the integration of persons with disabilities in all aspects of daily living, be it resolved that:

 

With regard to telecommunications equipment and services, accessibility and usability are critical, and affordability is essential, for the full inclusion of persons with disabilities; and

 

With regard to technology, barriers to usability and availability should be removed; all technologies should incorporate the concepts of accessibility and usability in design, development, production and dissemination, with the intention of making new technologies available to all persons regardless of disability.

 

Passed June 16, 2006 by Board

American Association of People with Disabilities (AAPD)

Washington, DC USA 


APPENDIX B  HHS Email Response to AAPD Letter of Concern, May 2008

 

In a message dated 5/5/2008 9:40:40 A.M. Eastern Standard Time, Mark.Urban@hhs.gov writes:

Jenifer,

 FYI regarding the April 28 Justice for All article on AHIC removing Accessibility from the requirements for Health IT/Public Health Records. The 508 requirements were not removed, but rather strengthened to be able to be used by non-federal electronic PHRs. The Office on Disability included me on the email, and I thought you should be aware. Give me a call if you have any questions.

 

To quote Rob Kolodner, Acting National Coordinator for HIT, from the email chain below:

 

 

 

Rather than narrowing the support, the federal reference was stricken so that ONC and the Department would work to make these a general state for PHRs. Recommendation 1.1 [3:52 into the meeting on the video] was changed

 

FROM 

 

HHS should coordinate activity to ensure that PHRs sponsored by the federal government are consistent with statutes and regulations, including accessibility standards in accordance with Section 503 (29 U.S.C. § 793), 504 (29 U.S.C. §794) and 508 (29 U.S.C. §794d) of the Rehabilitation Act of 1973 (Pub. L. 93-112).

 

TO

 

HHS should coordinate activity to ensure that PHRs [sponsored by the federal government] are consistent with statutes and regulations, including accessibility standards in accordance with Section 503 (29 U.S.C. § 793), 504 (29 U.S.C. §794) and 508 (29 U.S.C. §794d) of the Rehabilitation Act of 1973 (Pub. L. 93-112).

 

 

AND Recommendation 1.4 was modified [3:53 into the meeting on the video]

 

FROM

 

Any PHR offered directly or sponsored by HHS should be developed to accommodate technological applications that can be used by persons with disabilities, and can address accessibility issues that include differences in language, the broad range of racial and cultural diversity, and differences in family and community practice.

 

TO

 

Any PHR [offered directly or sponsored by HHS ] should be developed to accommodate technological applications that can be used by persons with disabilities, and can address accessibility issues that include differences in language, the broad range of racial and cultural diversity, and differences in family and community practice.

 

--Rob--

 

 

 

Mark D. Urban

HHS Section 508 Project Specialist

919-395-8513

Mark.urban@hhs.gov

Http://508.hhs.gov/

 

This email was sent to Jenifer Simpson at AAPD in response to our Letter of Concern to Secretary Leavitt, copy inserted below:

 

 

 

 

April 25, 2008

 

Honorable Michael Leavitt                                         via  Fax 202-619-7870

U.S. Secretary of Health & Human Services (HHS)

200 Independence Avenue, S.W.

Washington, DC 20201

 

Dear Secretary Leavitt:

 

The American Association of People with Disabilities (AAPD), the largest cross-disability national membership organization, is alarmed and disturbed that the American Health Information Community (AHIC), a taxpayer-funded and supported governmental advisory panel, struck out two accessibility provisions affecting persons with disabilities from recent consumer work group recommendations.

 

The recommendations eliminated by AHIC said that HHS should:

 

--"coordinate to ensure that Personal Health Records (PHRs) sponsored by the federal government are consistent with accessibility standards found in the Rehabilitation Act;" and

 

--"HHS should develop and accommodate to technological applications that can be used by persons with disabilities...."

 

Such action can only indicate that going forward, AHIC intends to discriminate against persons with disabilities.

 

Without these recommendations, there may be distrust by persons with disabilities, and their families and representatives, of health information technology initiatives, and likely excessive costs to retrofit in the future to ensure persons with disabilities have accessibility to and usability of electronic health records.

 

We recommend you reinstate these recommendations to show leadership and willingness to address the concerns of people with disabilities as health information technology advances.

 

Sincerely,


Jenifer Simpson
Senior Director, Telecommunications and Technology Policy Initiatives

 

American Association of People with Disabilities

1629 K Street NW, Suite 503 • Washington, DC 20006

phone 202-457-0046 (V/TTY) • 800-840-8844 (V/TTY) • fax 202-457-0473 • www.aapd.com

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cschwartz@aapd.com

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