Sharing Patient-Generated Health Data: The Role of Healthcare Quality, Mistrust, and Discrimination Across Race-Gender Identities

The widespread adoption of personal health devices has introduced a new source of health data for patients and providers to use in healthcare settings. Using patient-generated health data (PGHD) in healthcare settings has been found to improve patient-provider interactions and care outcomes. However, rates of PGHD sharing vary across the population. The decision to share one's PGHD with providers is influenced by past healthcare encounters including quality of care, medical mistrust, and healthcare discrimination. Furthermore, those experiences and patients' responses to them should be examined with an intersectional lens to acknowledge how gendered racism impacts health and healthcare. Using the 2022 Health Information National Trends Survey (HINTS) and logistic regression, this study shows how racial discrimination, healthcare quality, and medical mistrust are associated with patients' willingness and decision to share PGHD with providers among different race-gender identities. Factors associated with patients' perceived willingness to share data are not the same factors that are associated with actually sharing PGHD with providers. Perceived racial discrimination in healthcare settings was only significantly associated with willingness to share PGHD among Black men and white men. Meanwhile, poor overall healthcare quality was significantly associated with incidences of sharing data among Black and Hispanic women. These varied patterns across intent to share and choice to share, as well as across race-gender identity, reveal important insights into barriers to effective integration of PGHD in clinical spaces and the use of this technology to address healthcare inequities.