Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

ABSTRACT:

Background

Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and 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 using public deliberation methods to address this gap.

Objective

We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partner

SUBMITTER: Raj M 

PROVIDER: S-EPMC9929721 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature