JMIR Publications

ABSTRACT

Background:

Precision health offers the promise of advancing clinical care in ways that are data-driven, evidence-based, and personalized. However, the complex data sharing infrastructures, for-profit (commercial) and non-profit partnerships, and systems for data governance have been created with little attention to values, expectations, or preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options to address this gap using public deliberation methods.

Objective:

The objectives of our public deliberations were to: (a) understand the policy preferences of current and former cancer patients regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships, and (b) identify the values and perceived risks and benefits that participants invoked when formulating their policy preferences.

Methods:

We conducted two public deliberations, including pre- and post-surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, participants engaged in facilitated small group deliberations to discuss and rank policy preferences related to health information sharing such as use of the patient portal, email/text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preserving the status quo. Participants ranked their policy preferences individually, as small groups by mutual agreement, and then again, individually, in the post-survey.

Results:

After deliberation, the patient portal was ranked as the most preferred policy choice. Participants ranked the status quo as their least preferred policy by large majorities. Throughout, participants expressed concerns about transparency/awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around lack of transparency, awareness, and control.

Conclusions:

Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policy should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.