Discrimination, trust, and withholding information from providers: Implications for missing data and inequity

Quality care requires collaborative communication, information exchange, and decision-making between patients and providers. Complete and accurate data about patients and from patients are especially important as high volumes of data are used to build clinical decision support tools and inform precision medicine initiatives. However, systematically missing data can bias these tools and threaten their effectiveness. Data completeness relies in many ways on patients being comfortable disclosing information to their providers without prohibitive concerns about security or privacy. Patients are likely to withhold information in the context of low trust relationships with providers, but it is unknown how experiences of discrimination in the healthcare system also relate to non-disclosure. In this study, we assess the relationship between withholding information from providers, experiences of discrimination, and multiple types of patient trust. Using a nationally representative sample of US adults (n = 2,029), weighted logistic regression modeling indicated a statistically significant relationship between experiences of discrimination and withholding information from providers (OR 3.7; CI [2.6–5.2], p < .001). Low trust in provider disclosure of conflicts of interest and low trust in providers' responsible use of health information were also positively associated with non-disclosure. We further analyzed the relationship between non-disclosure and the five most common types of discrimination (e.g., discrimination based on race, education/income, weight, gender, and age). We observed that all five types were statistically significantly associated with non-disclosure (p < .05). These results suggest that experiences of discrimination and specific types of low trust have a meaningful association with a patient's willingness to share information with their provider, with important implications for the quality of data available for medical decision-making and care. Because incomplete information can contribute to lower quality care, especially in the context of data-driven decision-making, patients experiencing discrimination may be further disadvantaged and harmed by systematic data missingness in their records.