Public Comments
Comments provided on: July 15, 2024
Comments provided to: Office of Science and Technology Policy
The MRCT Center submitted public comments on the White House Office of Science and Technology Policy (OSTP) Request for Information entitled, “Federal Evidence Agenda on Disability Equity,” published at 89 Fed. Reg. 46924 (May 30, 2024). The collection of reliable disability data remains a challenge to researchers, and we applaud the OSTP’s commitment to measurements of health equity that is inclusive of people with disabilities. We share OSTP’s vision for bringing disability data to the foreground and your enthusiasm for understanding where and how best to include questions on disability. In our comments, we focused on information that would be helpful for the understanding of healthcare, health disparities, and clinical research and refrained from commenting on specific survey methodology used in federal and international data collection that is beyond our area of expertise. The MRCT Center pointed the OSTP to standard practices standard practices to safeguard privacy and security, as outlined by federal policy (HIPAA, OHRP, FDA, DOD, NIH, and others) that include a management plan for secure storage and transfer of data throughout the life cycle of the project; communicating clearly with participants when, why, and how disability data will be collected and used; always providing an option for participants to opt-out of answering any or all disability data questions; and only making disability data available [to research teams] through a controlled access environment. We advocate for plain language, logical reading order, the ability to easily go back and correct answers, and the provision of reasonable accommodations during the informed consent process and in any survey/measurement instrument (whether in print, on a computer, or mobile device). Finally, we note that for any form of disability data collection, people with disabilities must first be asked to participate, and that barriers such as inappropriately restrictive screening criteria should be eliminated.