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).

Abstract

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.

Department

Description

Provenance

Subjects

Humans, HIV Infections, Cardiovascular Diseases, Minority Groups, Adult, Middle Aged, Referral and Consultation, United States, Female, Male, Ethnicity, Racial Groups

Citation

Published Version (Please cite this version)

10.1097/mlr.0000000000002235

Publication Info

Marsolo, Keith, Karen Chiswell, Gretchen Sanders, Darcy Louzao, Thomas Phillips, Nwora Lance Okeke, Eric G Meissner, April Pettit, et al. (2026). 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). Medical care, 64(2S Suppl 3). pp. S269–S277. 10.1097/mlr.0000000000002235 Retrieved from https://hdl.handle.net/10161/34263.

This is constructed from limited available data and may be imprecise. To cite this article, please review & use the official citation provided by the journal.

Scholars@Duke

Marsolo

Keith Allen Marsolo

Professor in Population Health Sciences

Dr. Marsolo is a faculty member in the Department of Population Health Sciences (DPHS) and a member of the Duke Clinical Research Institute (DCRI).  His current research focuses on infrastructure to support the use of electronic health records (EHRs) and other real-world data sources in observational and comparative effectiveness research and public health surveillance, as well as standards and architectures for multi-center learning health systems.  He serves as faculty advisor to the DPHS DataShare Shared Facility and faculty lead for the Pragmatic Health Services Research (PHSR) functional group within the DCRI.  Dr. Marsolo received his PhD in Computer Science from The Ohio State University, with a dissertation on data mining, specifically the modeling and classification of biomedical data. 

Prior to joining DPHS, Dr. Marsolo was an an Associate Professor in the Division of Biomedical Informatics (BMI) at Cincinnati Children’s Hospital Medical Center (CCHMC). While at CCHMC, Dr. Marsolo served as faculty advisor for BMI Data Services, a shared facility that supported distributed data sharing networks and also developed registry platforms to support learning networks. These included a configurable system for capturing summary or practice-level measures, and a “data-in-once” architecture that allowed information to be collected in the EHR and then be automatically transferred to a registry in order to support chronic care management, quality improvement and research.

Area of Expertise: Informatics, Data Quality, Common Data Models, Data Standards and Data Harmonization

Darcy Louzao

Clinical Trials Project Leader III
Okeke

Nwora Lance Okeke

Associate Professor of Medicine
Bloomfield

Gerald Bloomfield

Associate Professor of Medicine

Gerald Bloomfield, MD, MPH, joined the faculty in Medicine and Global Health after completing his Cardiovascular Medicine fellowship training at Duke University Medical Center and Duke Clinical Research Institute. Bloomfield also completed the Duke Global Health Residency/Fellowship Pathway and a Fogarty International Clinical Research Fellowship. He received his medical education, internal medicine residency and Master of Public Health degree from Johns Hopkins University. Bloomfield leads a longstanding research and capacity building program on cardiovascular global health which includes work in under-resourced communities in the US and a number of low- and middle-income country settings.


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