JMIR Publications

ABSTRACT

Background:

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

Objective:

Assess public comfort with disclosing and automatically sharing REL data in healthcare settings.

Methods:

Using the 2022 DataHaven Community Wellbeing Survey from 1,034 adult Connecticut residents, we examined factors associated with public comfort with disclosing and automatically sharing REL data across healthcare settings. We generated unadjusted and adjusted logistic models to examine associations between factors and responses to the data-sharing questions.

Results:

Hispanic/Latino respondents were less willing to disclose REL data compared to White respondents (p<0.001). Individuals who sometimes trust healthcare providers (p=0.019) or rarely/never (p=0.040) were less willing to disclose REL data than those who almost always. African American/Black (p=0.004) and American Indian/Alaska Native (p<0.001) individuals were less likely to share REL data automatically than White individuals. Those with poor/fair self-rated health (SRH) versus very good/excellent were less likely to automatically share REL data (p=0.010). Individuals with less trust in their healthcare providers were less likely to automatically share REL data.

Conclusions:

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