Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study

Abstract

Background Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. Objective This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. Methods We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. Results The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group’s decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.