Realization of Disability Equity Through Ethical Data Management Practices

Abstract

People with disabilities (PWDs) experience worse health outcomes than people who do not have disabilities. Making meaningful progress on disability equity requires new ways of thinking about disability, new tools and processes, and new ways of working within the existing health care system. Immediate actions to increase disability equity include expanded data collection including patient-reported outcomes measures, more transparent, person-centered data governance and management, integration of public health and clinic-based health data, and renewed efforts to communicate with and treat PWDs with respect. Prevention of threats to realization of disability equity including a resurgence in the practice of eugenics, misuse of emerging technologies such as CRISPR, and surveillance-promoting technologies also are critical.