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June 2024 (Volume 102)
Quarterly Article
Cason Schmit
Brian Larson
Thomas Tanabe
Mahin Ramezani
Qi Zheng
Hye-Chung Kum
December 2024
The Future of Population Health
June 2022
Back to The Milbank Quarterly
Policy Points:
Context: Recent legislative privacy efforts have not included special provisions for public health data use. Although past studies documented support for public health data use, several global events in 2020 have raised awareness and concern about privacy and data use. This study aims to understand whether the events of 2020 affected US privacy preferences on secondary uses of identifiable data, focusing on public health and research uses.
Methods: We deployed two online surveys—in February and November 2020—on data privacy attitudes and preferences using a choice-based–conjoint analysis. Participants received different data-use scenario pairs—varied by the type of data, user, and purpose—and selected scenarios based on their comfort. A hierarchical Bayes regression model simulated population preferences.
Findings: There were 1,373 responses. There was no statistically significant difference in the population’s data preferences between February and November, each showing the highest comfort with population health and research data activities and the lowest with profit-driven activities. Most subgroups’ data preferences were comparable with the population’s preferences, except African Americans who showed significant decreases in comfort with population health and research.
Conclusions: Despite world-changing events, including a pandemic, we found bipartisan public support for using identifiable data for public health and research. The decreasing support among African Americans could relate to the increased awareness of systemic racism, its harms, and persistent disparities. The US population’s preferences support including legal provisions that permit public health and research data use in US laws, which are currently lacking specific public health use permissions.
