Assessing the impact of privacy-preserving record linkage on record overlap and patient demographic and clinical characteristics in PCORnet®, the National Patient-Centered Clinical Research Network.
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2023-02
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Abstract
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This article describes the implementation of a privacy-preserving record linkage (PPRL) solution across PCORnet®, the National Patient-Centered Clinical Research Network.Material and methods
Using a PPRL solution from Datavant, we quantified the degree of patient overlap across the network and report a de-duplicated analysis of the demographic and clinical characteristics of the PCORnet population.Results
There were ∼170M patient records across the responding Network Partners, with ∼138M (81%) of those corresponding to a unique patient. 82.1% of patients were found in a single partner and 14.7% were in 2. The percentage overlap between Partners ranged between 0% and 80% with a median of 0%. Linking patients' electronic health records with claims increased disease prevalence in every clinical characteristic, ranging between 63% and 173%.Discussion
The overlap between Partners was variable and depended on timeframe. However, patient data linkage changed the prevalence profile of the PCORnet patient population.Conclusions
This project was one of the largest linkage efforts of its kind and demonstrates the potential value of record linkage. Linkage between Partners may be most useful in cases where there is geographic proximity between Partners, an expectation that potential linkage Partners will be able to fill gaps in data, or a longer study timeframe.Type
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Marsolo, Keith, Daniel Kiernan, Sengwee Toh, Jasmin Phua, Darcy Louzao, Kevin Haynes, Mark Weiner, Francisco Angulo, et al. (2023). Assessing the impact of privacy-preserving record linkage on record overlap and patient demographic and clinical characteristics in PCORnet®, the National Patient-Centered Clinical Research Network. Journal of the American Medical Informatics Association : JAMIA, 30(3). pp. 447–455. 10.1093/jamia/ocac229 Retrieved from https://hdl.handle.net/10161/34287.
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Keith Allen Marsolo
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
Unless otherwise indicated, scholarly articles published by Duke faculty members are made available here with a CC-BY-NC (Creative Commons Attribution Non-Commercial) license, as enabled by the Duke Open Access Policy. If you wish to use the materials in ways not already permitted under CC-BY-NC, please consult the copyright owner. Other materials are made available here through the author’s grant of a non-exclusive license to make their work openly accessible.