Understanding men’s beliefs and concerns about linking health data in the context of precision medicine

BACKGROUND/OBJECTIVE: Linking data is a critical feature of precision medicine initiatives that involves integrating information from multiple sources to improve researchers’ and clinicians’ ability to deliver care. We have limited understanding of how individuals perceive linking data as it relates to precision medicine. The aim of this study was to identify how sociodemographics, comorbidities, and beliefs about precision medicine influence two outcomes related to linking data: beliefs about linking data and concerns about linking data among men. METHODS: We recruited 124 adult men from primary care practices at a large clinical research university to complete a cross-sectional survey that included questions about sociodemographic characteristics, comorbidities, beliefs, benefits, and limitations of precision medicine, and two outcomes of interest: beliefs about the value of linking data and concerns about linking data. Descriptive statistics, bivariate associations, and multivariable regression were conducted. RESULTS: Participants had positive beliefs about linking data for precision medicine (M = 4.05/5) and average concern about linking data (M = 2.1/5). Final multivariable models revealed that higher levels of loneliness are associated with more positive beliefs about linking data (β = 0.41, p = 0.027). Races other than African American (β = –0.64, p = 0.009) and those with lower perceived limitations of precision medicine were less likely to be concerned about linking data (β = –0.75, p = 0.0006). CONCLUSION: Our results advance the literature about perceptions of linking data for use in clinical and research studies among men. Better understanding of factors associated with more positive perceptions of data linkages could help improve how researchers recruit and engage participants.