Rural and urban patient perceptions of electronic health record data use in research and clinical care: A cross-sectional survey research study.

Abstract

Understand patient perceptions of sharing and use of electronic health record (EHR) data in research and clinical care, including whether differences exist between rural and urban patients. We adapted survey items from existing surveys and developed some new items, making revisions following cognitive interviews with eight patients in a rural-serving health system. We then invited 18,251 health system patients to take the electronic survey (7/11/2023-10/13/2023, 10/31/2023-01/02/2024). Analyses included bivariate statistics and multivariable ordered and binary logistic regression examining associations between participant responses and rurality using respondent zip code and associated 2020 Rural-Urban Commuting Area code (rural: 4-10; urban: 1-3). We analyzed open-ended survey questions with qualitative content analysis. Of 1,929 participants who started the survey (10.6% response rate), 1,912 completed questions beyond demographics and were included in the analytical sample. Most respondents were female (66.9%), White (93.4%), employed for wages (45.1%) or retired (37.2%), had at least some college (88.3%), and lived in urban locales (55.0%). Rural respondents had significantly lower medical mistrust levels than urban. Comfort with sharing data for research was high amongst respondents, particularly when de-identified. Some differences were seen between rural and urban respondents in adjusted models, foremost being rural respondents having higher adjusted odds (aOR = 1.43, 95% CI = 1.16-1.77, p = 0.001) of being more comfortable sharing data if their zip code was removed. Rural respondents had significantly higher odds of being comfortable with some demographic data being in the EHR and accessible to health system providers and researchers compared to urban respondents. Respondents generally supported sharing health data for research and care purposes. Although zip code is frequently used to demarcate rurality in U.S.-based research, rural respondents may be more comfortable sharing data when zip code is removed. Opportunities to assuage concerns regarding data use are also described.