Lessons Learned From Using PCORnet® to Support the Pathways to Cardiovascular Disease Prevention and Impact of Specialty Referral Among People With HIV From Underrepresented Racial and Ethnic Groups in the Southern United States (PATHWAYS Study).

OBJECTIVE: The PATHWAYS Study utilized data from the PCORnet® Common Data Model (CDM) at 4 sites participating in the STAR Clinical Research Network to assess the frequency of cardiology encounters for under-represented racial and ethnic minority group people living with Human Immunodeficiency Virus and to evaluate the determinants associated with specialty encounters from 2014 to 2020. This study dealt with several factors that other projects leveraging PCORnet might face. We describe benefits of working with the network, challenges, and recommendations for future study teams.

METHODS: PATHWAYS used a mix of queries through the study, including study-specific data quality and analytic queries. A "sidecar" table was created for the PCORnet® Common Data Model to support the inclusion of referral data. Linkage to the National Death Index was incorporated into the study to allow for more comprehensive information on participant deaths.

RESULTS: Data quality assessments identified several issues over the course of the study that needed to be addressed by the data teams at each site. The referral data proved not to be robust enough to support the proposed analyses, so an alternative strategy was required that leveraged encounter information. The National Data Index included information on participant deaths that were not part of each site's PCORnet® CDM.

CONCLUSION: Incorporating study-specific data characterization into the overall analysis plan is important. When working with new data, or variables not commonly used within studies, teams should include time and effort for site resources to investigate their local clinical workflows and potential mappings to the PCORnet® CDM.