Model for Improving Patient Engagement and Data Integration with National Patient-Centered Clinical Research Network (PCORnet) Patient-Powered Research Networks and Payer Stakeholders [Methods Study], United States, 2015-2020

Data from healthcare systems, patients and communities, and health plans can support health research. Two types of data sources are

Patient-powered research networks, or PPRNs. In PPRNs, patients, families, caregivers, and community members share health data with the network. They work closely with researchers to plan and conduct research.
Health plan research networks, or HPRNs. In HPRNs, networks of health plans have access to health claims data from members for research.

By linking patient records across PPRNs and HPRNs, researchers may be able to do more robust research. To link records, researchers use computer programs to connect the records of people in a PPRN with their claims data in an HPRN. Current methods to link records require use of personal information, such as names and dates of birth. But patients may not want to share this information.
In this project, the research team developed methods for linking data from PPRNs and HPRNs without using patients' personal information.