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Jenifer Simpson’s Remarks on “HIT Issues for Persons with Disabilities” at the Stakeholder Roundtable held as part of a policy forum entitled “Connecting Disability Users and Systems to Health Information Networks.” The forum was sponsored by the Claremont Graduate University's E-Health Policy Forum in Washington, DC to address the needs of the disability community, at The Kay Center for E-Health Research, Washington, D.C., April 19, 2007.

Jenifer Simpson is Senior Director, Telecommunications and Technology Policy, at the American Association of People with Disabilities (AAPD), Washington, D.C. Her remarks below, as a panel participant, are not verbatim but constructed from notes.

More information on the forum is available
Forum podcast available
Podcast of Jenifer Simpson’s remarks.

Thank you very much for inviting me to speak on this topic. I’m just going to go over quickly some of the policy issues that AAPD has been looking at in regard to health information technology (HIT).

AAPD POSITIONING

We have recently realized that there are likely to be special disability interests in HIT, as consumers, since people with disabilities are often high users of health care, are beneficiaries of public health and care programs, and are also consumers like any other group.

We have begun meeting with other coalitions that are also focused on this topic: e.g., Electronic Medical Records Coalition, Patient Privacy Coalition, Alliance for Health Reform and others who approach us

AAPD has started to look at the various subject areas with health information technology over the past few months and is evolving some specific policy positions in light of AAPD’s overarching Resolution on Technology, which is:

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 6/16/06 by AAPD Board

Therefore, we are essentially looking at accessibility and usability issues, although affordability may influence the thinking to some degree.

AAPD’s RECOMMENDATIONS FOR DEVELOPING A DISABILITY POLICY POSITION IN HIT

We believe any disability policy in this area should focus on the following areas:

1. TERMINOLOGY “Health consumers” rather than “patients. This is a matter of sensitivity to people with disabilities who have long been considered exclusively in terms of their medical diagnoses; use of the word “Patients” sounds like doctors wrote this while “health consumers” sounds more like advocates did – broadens the palatability of the principles to our folks
   
   
2. Some evolving principles that we are looking at and analyzing include the following:
   1. In regard to PRIVACY issues: “Recognize that the medical privacy of health consumers with disabilities, including but not limited to persons with vision, speech, and hearing disabilities, relies upon user interfaces that are both accessible and usable.” This is a bit like the voting issue. If the technology involved doesn’t allow the individual with a disability to not be compelled to ask someone else’s or to read the record for them, it’s just not going to work for some.
      
      
   2. In regard to TECHNOLOGY AND SYSTEMS development (for people with disabilities): A focus is the following: “Ensure that technologies for medical records are designed, developed and fabricated so that persons with disabilities, including but not limited to persons with vision, speech and hearing disabilities, enjoy the same functionally equivalent access to and usability of their medical records as persons without disabilities.” This is about how records are read and used and accessed by consumers, employees etc. with disabilities.
      
      
   3. In regard to CONFIDENTIALITY, an evolving issue that we are looking at: Confidentiality in medical records refers to the obligations of those 3rd parties who receive the information to respect the privacy interests of those to whom the data relate. We believe that there may be serious issues involved for persons with disabilities in how records are handled given the persistence of discrimination and stigmatization of some disabilities, particularly in areas like employment, specifically hiring and upward mobility within companies. We have heard that HIPAA does not now include “consent” since the amendments in 2002 so now 600-800K covered entities (employers, insurance companies, consumer reporting agencies, government agencies and others) are legally authorized to see, use and sell private, sensitive health info. Also HHS, the enforcing entity has never resolved a complaint.
      
      
   4. In regard to SECURITY, this also is an evolving issue that we are looking at: Since this involves the degree to which data, databases or other assets are protected from exposure accidentally or maliciously we have concerns about how security measures, such as firewalls, authorization for levels of access, authentication and for encryption are used to protect medical data. Clearly we want protections equal to or stronger than our financial data, but we believe there could be accessibility and usability issues either for health consumers with disabilities or for health industry employees with disabilities. For instance, authentication procedures that involve biometrics, dialing or remembering of codes, or other system barriers that prevent usability. This is a difficult area, in light of our overarching requirement for accessibility and usability. But we believe technology and software can solve this.
      
      
   5. CRITICAL EMERGING CAVEAT: A strong principle is emerging that “Care cannot be conditioned on using HIT.” Here we are thinking of incentive systems to encourage people to move to Electronic Medical Records (EMRs) and Personal Health Records (PHRs). While it may be true that we’re all going to end up having to use them anyway, there are lessons to be learned from the following experiences of people with disabilities involving other technologies:
      1. The ATM and Voting Machine experiences of blind persons.
      2. Software inaccessibility issues such as with PDFs and on Internet web sites.
      3. If systems involve telecommunications, wireless and wire line phone access for instance, how will they work for persons with hearing disabilities?

USAGE ISSUES

We believe Ownership of medical records may be a critical disability focus: I.e., Owning one’s own medical record could be very empowering with consumers with disabilities – who may have larger and more complicated medical records than others, and having control over this may impact greatly “bad” health care providers.

However, there are concerns from AAPD’s point of view on this topic:

1. Caregiver issues: who owns the record? And for what purpose?
2. Right of persons with mental illness to own their records.
3. Adults with intellectual disabilities -- who owns and controls his records.
4. Researcher issues: the right to delve into records even if identifying information removed. What are implications for persons with disabilities?

ONE OVERALL RECOMMENDATION

A need to proceed slowly, with trials and pilots, and constant evaluation and assessment.
Thank you.