Community Comfort With Automatic Sharing of Race, Ethnicity, and Language Data Between Health Care Settings: Cross-Sectional Study.

Abstract

Background: Little is known regarding patient attitudes toward automatic sharing of race, ethnicity, and language (REL) data in health care settings despite the universal practice of data sharing across health care institutions and providers.

Objective: This study aims to assess public comfort with disclosing and automatically sharing REL data in health care settings and understand the social factors associated with these attitudes.

Methods: Using the 2022 DataHaven Community Wellbeing Survey from 1196 adult Connecticut residents, we examined factors associated with public comfort with disclosing and automatically sharing REL data across health care settings. We generated unadjusted and adjusted logistic models to examine associations between factors and responses to the data-sharing questions.

Results: Most residents surveyed were White (n=873, 73%), followed by African American or Black (n=167, 14%), Asian or Native Hawaiian or other Pacific Islander (n=31, 2.6%), multiracial (n=31, 2.6%), and American Indian or Alaska Native (n=12, 1%). The majority of respondents were not Hispanic or Latino (n=1051, 87.9%). More than half of respondents reported excellent or very good self-rated health (SRH; n=635, 53.1%), and most participants reported almost always trusting their health care provider (n=939, 78.5%). Most participants reported being willing to share race and ethnicity data at a hospital or clinic (n=1008, 84.3%) and REL data automatically (n=947, 79.2%) in health care settings. Hispanic or Latino (adjusted odds ratio [AOR] 0.049, 95% CI 0.25-0.94) and multiracial (AOR 0.32, 95% CI 0.14-0.76) respondents were less likely to be willing to disclose race and ethnicity data compared to those who were not Hispanic or Latino and who were White, respectively. Individuals who sometimes trust health care providers (AOR 0.57, 95% CI 0.35-0.94) or rarely/never (AOR 0.35, 95% CI 0.15-0.85) were less likely to be willing to disclose race and ethnicity data than those who almost always trust health care providers. African American or Black (AOR 0.46, 95% CI 0.29-0.72) and American Indian or Alaska Native (AOR 0.18, 95% CI 0.04-0.75) individuals were less likely to be willing to share REL data automatically than White individuals. Those who sometimes trust health care providers (AOR 0.48, 95% CI 0.31-0.74) or rarely/never trust health care providers (AOR 0.25, 95% CI 0.11-0.56) were less likely to be willing to share REL data automatically than those who almost always trust health care providers. Those with poor/fair SRH versus very good/excellent SRH were less likely to be willing to share REL data automatically (AOR 0.54, 95% CI 0.34-0.85).

Conclusions: Racial and ethnic identity, SRH, and trust in health care providers affect willingness to share REL information with providers and other health systems.