Beyond consent: patient preferences for governance of use of clinical data and samples

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DESCRIPTION (provided by applicant): Currently, there is little known about patient preferences on the use of medical records and patient data and the ethical issues related to privacy, confidentiality, informed consent and return of results, particularly in the context of EMRs. In addition, there is a dearth of data on patient preferences for specific governance strategies. This is particularly true of patients who identify with groups underrepresented in medical research. To address this gap, the proposed study will assess patients' preferences for how their clinical data and samples should be accessed, used and managed in the governance of EMRs and biobanking. We will use a mixed methods approach in triangulating data from semi-structured individual interviews, focus groups and a quantitative survey of attitudes of patients from diverse populations. We anticipate that our findings will have direct implications fo policies on data use and sharing by hospitals and clinics, as well as for institutional review boards and researchers. The specific aims of this research are: Aim 1: To assess and compare patient attitudes towards use and governance of clinical data and samples in a racially and ethnically diverse patient population, with an emphasis on: a) perception and weighing of tradeoffs between the risks and benefits; b) preferences for and acceptability of collecting, using and sharing clinical data and samples under "boundary" conditions; c) attitudes regarding trust and its relationship to governance strategies; d) the reasons for these preferences and attitudes and; e) the factors that contribute to various preferences and attitudes. Aim 2: To identify factors associated with attitudes and preferences towards clinical data and sample use, sharing and governance.