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Objectives: To describe the differences and similarities in perceptions and attitudes regarding COVID-19 vaccination among Black and Latinx Michiganders. Methods: Utilizing a convergent mixed-methods approach, forty interviews were conducted with 24 Black and 16 Latinx community members between December 2020 and June 2021 across four Michigan counties disproportionately affected by COVID-19. Survey data were collected from a representative sample of 1598 individuals living in Detroit between January and March 2021. Results: Vaccine hesitancy was a more prevalent theme among Black interview participants than Latinx participants. Trust in experts and vaccine access were significantly more influential in the decision to vaccinate for Latinx residents compared to Black residents. Latinx individuals reported greater intention to receive a COVID-19 vaccine compared to Black respondents. Multinomial logit models revealed that 30% of Black participants expressed hesitancy about the COVID-19 vaccine compared to 10% of Latinx respondents. Conclusions and Implications: This study provides a deeper understanding of key differences and similarities in vaccine acceptance/hesitancy across race/ethnicity. The findings can enhance health interventions and outcomes by informing the development of culturally responsive practices tailored to specific communities.

Objective. To measure public trust in a health information sharing in a broadly defined health system (system trust), inclusive of health care, public health, and research; to identify individual characteristics that predict system trust; and to consider these findings in the context of national health initiatives (e.g., learning health systems and precision medicine) that will expand the scope of data sharing. Data Sources. Survey data (n = 1,011) were collected in February 2014. Study Design. We constructed a composite index of four dimensions of system trust--competency, fidelity, integrity, and trustworthiness. The index was used in linear regression evaluating demographic and psychosocial predictors of system trust. Data Collection. Data were collected by GfK Custom using a nationally representative sample and analyzed in Stata 13.0. Principal Findings. Our findings suggest the public's trust may not meet the needs of health systems as they enter an era of expanded data sharing. We found that a majority of the U.S. public does not trust the organizations that have health information and share it (i.e., the health system) in one or more dimensions. Together, demographic and psychosocial factors accounted for ~18 percent of the observed variability in system trust. Future research should consider additional predictors of system trust such as knowledge, attitudes, and beliefs to inform policies and practices for health data sharing. Key Words. Public trust, health information, technology, Data sharing on a large scale is integral to emerging national initiatives (e.g., learning health systems and precision medicine) and promises to address the well-known and chronic maladies of the [...]

Purpose:Some large population biobanks that house biospecimens and health information for research seek broad consent from participants, whereas others reconsent for specific new studies. Understanding research participants’ attitudes and preferences about broad and narrow consent may improve recruitment, retention, and public support.Methods:An online survey was conducted among a representative sample of 4,659 US adults to examine relationships between consent preferences and demographic factors, beliefs about privacy and the value of research, and the perceived trustworthiness of researchers.Results:Participants preferred broad consent (52%) over study-by-study consent models (48%). Higher preferences for study-by-study consent observed among black non-Hispanic respondents and respondents with lower income and education were explained by differences in the prevalence of one or more beliefs about the study. Respondents with fears about research and those who would feel respected if asked for permission for each research use preferred study-by-study consent. Preference for broad consent was related to the desire not to be bothered with multiple requests and the belief that the study could lead to improved treatments, cures, and lives saved.Conclusion:These data suggest that support for broad consent is contingent on sufficient information about data use. Work with research participants and community leaders to understand, respond to, and influence opinions about a given, ongoing study may improve uptake of broad consent.Genet Med 16 1, 11–18.

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., based on race, education/income, weight, gender, and age). We observed that all five types are 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.

This study aimed to (1) examine what patient-centeredness means for older adults and family caregivers, and (2) assess circumstances underlying their preference for geriatric care. We conducted separate focus groups with older adults and family caregivers of older adults about health care experiences and expectations and conducted a vignette-based experiment to assess preference for geriatric care. Participants expressed a need for greater skill and empathy and integration of caregivers. They preferred geriatric care to usual primary care with increasing social, health, and healthcare complexity. Distinct needs of older adults should be considered in referral practices to geriatric medicine.

IMPORTANCE: Although considerable evidence exists on the association between negative health outcomes and daily experiences of discrimination, less is known about such experiences in the health care system at the national level. It is critically necessary to measure and address discrimination in the health care system to mitigate harm to patients and as part of the larger ongoing project of responding to health inequities. OBJECTIVES: To (1) identify the national prevalence of patient-reported experiences of discrimination in the health care system, the frequency with which they occur, and the main types of discrimination experienced and (2) examine differences in the prevalence of discrimination across demographic groups. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional national survey fielded online in May 2019 used a general population sample from the National Opinion Research Center’s AmeriSpeak Panel. Surveys were sent to 3253 US adults aged 21 years or older, including oversamples of African American respondents, Hispanic respondents, and respondents with annual household incomes below 200% of the federal poverty level. MAIN OUTCOMES AND MEASURES: Analyses drew on 3 survey items measuring patient-reported experiences of discrimination, the primary types of discrimination experienced, the frequency with which they occurred, and the demographic and health-related characteristics of the respondents. Weighted bivariable and multivariable logistic regressions were conducted to assess associations between experiences of discrimination and several demographic and health-related characteristics. RESULTS: Of 2137 US adult respondents who completed the survey (66.3% response rate; unweighted 51.0% female; mean [SD] age, 49.6 [16.3] years), 458 (21.4%) reported that they had experienced discrimination in the health care system. After applying weights to generate population-level estimates, most of those who had experienced discrimination (330 [72.0%]) reported experiencing it more than once. Of 458 reporting experiences of discrimination, racial/ethnic discrimination was the most common type (79 [17.3%]), followed by discrimination based on educational or income level (59 [12.9%]), weight (53 [11.6%]), sex (52 [11.4%]), and age (44 [9.6%]). In multivariable analysis, the odds of experiencing discrimination were higher for respondents who identified as female (odds ratio [OR], 1.88; 95% CI, 1.50-2.36) and lower for older respondents (OR, 0.98; 95% CI, 0.98-0.99), respondents earning at least $50?000 in annual household income (OR, 0.76; 95% CI, 0.60-0.95), and those reporting good (OR, 0.59; 95% CI, 0.46-0.75) or excellent (OR, 0.41; 95% CI, 0.31-0.56) health compared with poor or fair health. CONCLUSIONS AND RELEVANCE: The results of this study suggest that experiences of discrimination in the health care system appear more common than previously recognized and deserve considerable attention. These findings contribute to understanding of the scale at which interpersonal discrimination occurs in the US health care system and provide crucial evidence for next steps in assessing the risks and consequences of such discrimination. The findings also point to a need for further analysis of how interpersonal discrimination interacts with structural inequities and social determinants of health to build effective responses.

Opportunities to advance science increasingly arise through investigations embedded within routine clinical practice in the form of learning health systems. Such activities challenge conventional approaches to research regulation that have not caught up with those opportunities, often imposing burdens generalized from riskier research. We analyze the rules and conventions in the US, demonstrating how even those rules are compatible with a much more flexible approach to participant risk, institutional oversight, participant consent, and disclosure for low-risk learning activities in all jurisdictions.