Advocates, researchers, policymakers, and providers agree that data can be a force for health equity. In particular, demographic data can further understanding of the clinical and cultural needs of underserved populations as well as point to disparities and inequities that result from historical and present discrimination. Yet, with more data comes a heightened need to protect individuals from accidental disclosure, discrimination, and other privacy violations.
As one potential risk, some for-profit companies clandestinely collect data on users of health technology or make improper use of health data by selling user information to other companies. Bad actors can now identify individuals by combining publicly-available, anonymized data sets in a process known as re-identification. Most Americans say they are concerned with how for-profit companies and the government alike treat their personal information, and in some cases, this worry is not misplaced. Misuse and the potential for misuse generates mistrust that negatively affects efforts to collect data for good, including demographic data collected for the purpose of advancing health equity.
This month, the National Health Law Program, in conjunction with our partners the Movement Advancement Project, Race Forward, the Disability Rights Education and Defense Fund, and Justice in Aging will release a series of papers examining this tension. We write about the need for health programs—including Medicaid, CHIP, Medicare, and the Health Insurance Marketplace—to collect demographic information of program participants. Health programs, along with plans and providers, need to understand differences based on race, ethnicity, written and spoken language, age, sexual orientation, gender identity, disabilities, and variations in sex characteristics (e.g., intersex status) to monitor quality, access, and outcomes; prevent discrimination; and provide culturally, clinically competent care. And contrary to beliefs that most people would prefer not to discuss such information, individuals do want to share demographic information with health care entities to improve their care.
Use of demographic data must be limited to the purpose for which it is collected for efforts to advance health equity to succeed. Our papers discuss still-unchecked ways that improper use of data undermines public trust in health care entities and exposes underserved groups to further discrimination and inequitable treatment. Overall, we hope to highlight the ways that all stakeholders—federal, state, and local governments, health programs, plans, and providers—can take to improve their privacy practices in collecting, sharing, and analyzing demographic data and to limit use of demographic data to the purpose for which is was collected.
Papers will appear here and on our Data Privacy series landing page as they are published:
- Administrative Data: Providing Information to Advance Autonomy and Drive Equality | Naomi G. Goldberg, M.P.P. Movement Advancement Project
- Striking the Balance: Approaches to Racial Equitable Data Collection that Protect Privacy in Health | Patrick L. Mason, Race Forward
- This Data Not That Data: Big Data, Privacy, and the Impact on People with Disabilities | Silvia Yee | Mary Lou Breslin, Disability Rights Education and Defense Fund
- Data and Discrimination: Improving Data Privacy for Low-Income Older Adults in Managed Care | Georgia Burke, Justice in Aging