Risks and Rewards of Demographic Data Collection: How Effective Data Privacy Can Promote Health Equity

Executive Summary

This four-part report series is a joint project of the National Health Law Program, the Disability Rights Education and Defense Fund (DREDF), Justice in Aging, Movement Advancement Project, and Race Forward

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Data enables us to identify and study health programs and monitor trends in population health as never before. Demographic data in particular can illuminate differences in outcomes, access, enrollment, patient experience, and utilization in programs like Medicaid, CHIP, Medicare, and the Health Insurance Marketplaces. These differences can point to problematic health disparities or bring to light the specific health needs of various populations. When used effectively, demographic data can help health programs and health systems address historical inequities and provide high-quality, individualized, culturally-competent health care.

Data collection by such large programs is not without risks, particularly in a world where vast and seemingly unrelated pieces of individual data are commercially traded. Without appropriate guardrails, demographic information can accidentally or unintentionally fall into the hands of third party data miners or allow for re-identification of individual subjects. Without transparency and clarity in how demographic information will be used, data collection can generate skepticism or mistrust in systems that are actually meant to improve health care quality and prevent historical discrimination. These missteps or misuses render demographic data more harmful than helpful and work against the purpose of improving health care access and outcomes across all populations.

This series of papers by NHeLP and its partners – the Movement Advancement Project, Race Forward, the Disability Rights Education and Defense Fund (DREDF), and Justice in Aging – discuss ways that health care entities can mitigate these legitimate concerns while employing demographic data in its highest and best use—to advance health care quality across all populations. Our work aims to dispel myths about individuals’ willingness to share demographic information with health programs, plans, and providers, to highlight transparency and confidentiality protections that enable appropriate data-sharing, and to recommend policies that secure personal identifying information and prevent misuse while promoting effective use of demographic data.