NCD Letter to NCHIT on AMDE Report
Micky Tripathi, Ph.D. M.P.P.
National Coordinator for Health Information Technology
Office of the National Coordinator for Health Information Technology
U.S. Department of Health and Human Services
330 C St SW, Floor 7
Washington, DC 20201
Steven Posnack, M.S., M.H.S.
Deputy National Coordinator for Health Information Technology
Office of the National Coordinator for Health Information Technology
U.S. Department of Health and Human Services
330 C St SW, Floor 7
Washington, DC 20201
Dear Dr. Tripathi and Mr. Posnack:
I am writing to you in my capacity as the Chairman of the National Council on Disability (NCD) to provide you with findings from our June 2021 report on accessible medical diagnostic equipment and to present a recommendation to the Office of the National Coordinator for Health Information Technology (NCHIT) based on our findings.
NCD is an independent federal agency charged with advising the President, his administration, Congress, and federal agencies on matters of disability law and policy. For a number of years, NCD has embarked on an appraisal of healthcare access, treatment, and outcomes for patients with disabilities. Framed in the context of reducing healthcare disparities and achieving health equity for patients with disabilities, NCD’s report, Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities,1 provides a review of decades of literature that acknowledges and confirms the statistically significant sub-optimal treatment of people with disabilities in the receipt of healthcare from sources including the U.S. Surgeon General, the Center for Disease Control and Prevention, the National Institutes of Health, the National Academies of Science, Engineering and Medicine, the Agency for Healthcare and Research Quality. While several factors contribute to the well documented health disparities experienced by patients with disabilities (i.e., access, stigma, reimbursement, transportation, economics, and environment), our report focuses on the widespread lack of accessible medical diagnostic equipment (accessible MDE) in healthcare settings that creates a physical access barrier to over 20 million individuals with mobility limitations in the U.S. This number is expected to grow given population health trends, such as increasing rates of chronic medical conditions, obesity, and the aging population.
Among NCD’s key findings:
- Adults with disabilities: are 12.7 times more likely to report poor overall health status compared to adults without disabilities; have obesity rates for adults and youth with disabilities are 58 and 38 percent, respectively, higher than those of their nondisabled peers; less likely than people without disabilities to have had an annual dental visit; less likely than people without disabilities to have had a mammogram in the last two years; less likely than people without disabilities to have had a Pap test in the last three years; and significantly less likely to be weighed as part of routine care.
- Adults with mobility impairments are at higher risk of foregoing or delaying necessary healthcare and having unmet medical, dental, and prescription needs compared to adults without disabilities.
- Lack of timely access to primary and preventive care can result in the development of chronic and secondary conditions as well as the exacerbation of the original disabling condition itself, resulting in poorer health outcomes.
- The lack of accessible MDE remains widespread despite federal laws which require healthcare providers to ensure full and equal access to their healthcare services and facilities.
- Inaccessible MDE is a major barrier to receiving necessary healthcare, compromises quality of care, and has resulted in delayed care, incomplete care, and missed diagnoses, and perpetuates the significant health disparities of people with mobility impairments.
- Without widespread availability of height adjustable examination tables, accessible mammography equipment, accessible weight scales and lift equipment to facilitate transfers, among other accessible medical and diagnostic equipment, people with mobility impairments will remain less likely to receive recommended preventive healthcare services—like cervical cancer screening; colorectal cancer screening; obesity screening; and breast cancer screening.
Bolstering our report findings and the research described therein, is a newly released national survey that explored the extent to which outpatient physicians nationwide use accessible weight scales and exam tables/chair when caring for patients with significant mobility limitations.2 A survey was developed and administered to 714 physicians in seven specialties that see large numbers of patients with disabilities, including OB/GYN because many women see gynecologists for routine care and prior research (as discussed in NCD’s report) identified high rates of inaccessible equipment in OB/GYN offices. The survey revealed that only 22.6% used accessible weight scales, and only 40.3% used accessible exam tables/chairs.3
We have been talking about healthcare disparities for decades, but despite the clear need shown in study after study, the use of inaccessible equipment used for basic healthcare remains the norm. As our report highlights, a contributor to this problem is the lack of a universally agreed upon coding system to document the presence of disability at the health system level. Inclusion of this data in the “Meaningful Use Standards” (MUS), which delineate a core set of clinical and demographic variables that must be included in electronic health records, would help fill this void. Furthermore, until this information is required, the presence of disability and related accessibility needs will not be properly captured in the U.S. healthcare system, further perpetuating the unequal treatment of patients with disabilities and the void in critical data to accurately inform federal healthcare equity efforts. The U.S. Access Board has previously requested that NCHIT include disability-related variables in the MUS, however, citing concerns over provider and patient burden, NCHIT declined to take this action.
Today, NCD urges you to act on behalf of over 20 million people with mobility impairments who need improved access to equitable healthcare. Specifically, NCD recommends that NCHIT add disability-related items to the MUS to promote interoperability and data tracking across health systems and federal and state programs. We believe this action will increase opportunities for preventive care - resulting in improved health outcomes and reduced health disparities. Furthermore, it would advance NCHIT’s mission to “improve the health and well-being of individuals and communities through the use of technology and health information….” It would also advance NCHIT’s strategic goals of advancing person-centered health and fostering innovation.
We would welcome a meeting with you to discuss this letter in the near future. As a matter of courtesy, Ana Torres-Davis, Senior Attorney Advisor, who oversaw the development of our report referenced here, will reach out to your office on August 16, 2021, to coordinate a date and time for a potential meeting between us to discuss the issues addressed in this letter unless we hear from you before then. If you have any questions, Ms. Torres-Davis can be reached at atorresdavis@ncd.gov. You may also reach me directly at agallegos@ncd.gov.
Respectfully,
Andrés J. Gallegos
Chairman
1 National Council on Disability (June 2021). Available online at https://ncd.gov/publications/2021/enforceable-accessible-medical-equipment-standards.
2 Lisa I. Iezzoni MD, MSc , Sowmya R. Rao PhD , Julie Ressalam MPH, Dragana Bolcic-Jankovic PhD , Karen Donelan ScD, EdM , Nicole Agaronnik, Tara Lagu MD, MPH, Eric G. Campbell PhD, Use of Accessible Weight Scales and Examination Tables/Chairs for Patients with Significant Mobility Limitations by Physicians Nationwide, The Joint Commission Journal on Quality and Patient Safety (2021), doi: https://doi.org/10.1016/j.jcjq.2021.06.005
3 Id.