Balancing access to survey data with protecting privacy and confidentiality

As a public service public health research project, the California Health Interview Survey (CHIS) is challenged to strike a balance between maximizing data access and protecting the privacy and confidentiality of survey respondents. To meet this challenge, the UCLA Center for Health Policy Research developed a dissemination model with multiple channels of data access. In this presentation, the Center's dissemination model is described within the context of protecting the privacy and confidentiality of survey participants. As the nation's largest state health survey, CHIS collects data on over 70 health topics from California residents. It includes information not available in many other data sources, such as sub-state geographic identifiers (county, zip code, longitude and latitude coordinates), and detailed demographic characteristics, such as racial/ethnic identity and citizenship. To provide wide access to data while protecting confidentiality, CHIS data are available through three avenues: 1) Limited content public use microdata files available on the CHIS website; 2) An online query system, AskCHIS, that provides weighted population estimates; 3) Remote confidential data access through the CHIS Data Access Center after an application process, where researchers submit code or have code written to receive output. Ensuring confidentiality is paramount because it assures the continuation of respondent participation in health surveys. However, data availability is critical to innovative research and accurate assessments. The CHIS dissemination strategy may be a helpful model for other projects with similar challenges. While the current data disclosure approach provides the ability to accommodate changing research and statistical methodology, CHIS continues to explore new findings to incorporate policies to address newly emerging techniques and issues such as small area estimation and determining appropriate thresholds for small sample datasets. Discussions among different entities can highlight the importance of this issue and bring together ideas and solutions that satisfy both sides of the spectrum.