Thomas W. Carton, PhD, MS
Chief Data Officer, Louisiana Public Health Institute
Keith Marsolo, PhD
Department of Population Health Sciences
Duke University School of Medicine
Data Linkage Within, Across, and Beyond PCORnet
PCORnet; Data linkage; Hashed linkage; Clinical Data Research Networks (CDRNs); Health Plan Research Networks; DataMarts; Salt; Electronic health records; Common Data Model
- The PCORnet network provides opportunities for data linkage within the network, across the network, and beyond the network. The formation of PCORnet 2.0 provides additional opportunities for linkage.
- PCORnet 2.0’s structure includes 9 Clinical Data Research Networks and 2 Health Plan Research Networks.
- The patient overlap between CDRNs and HPRNs is unknown but expected to be high. The patient overlap between CDRN and HPRN DataMarts is unknown but expected to be low in most cases (expect select markets).
Hash codes are not considered private health information because they are an encrypted identifier that cannot be linked back to the patient.
The primary challenges of the hashed data linkage system lie in the differences of opinion in how data are best interpreted. Working through the governance and regulatory components have been the most difficult.
Contending with differences in data coding that are present among systems can create different hash codes. However, there are ways to make the process consistent so that parameters can be established around the program.
@Collaboratory1, @PCORnetwork, @REACHnetCDRN, @DukeMedSchool, #medicare, #datalinkage, #pctGR