Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnet®, the National Patient-Centered Clinical Research Network

Daniel Kiernan; Thomas Carton; Sengwee Toh; Jasmin Phua; Maryan Zirkle; Darcy Louzao; Kevin Haynes; Mark Weiner; Francisco Angulo; Charles Bailey; Jiang Bian; Daniel Fort; Shaun Grannis; Ashok Kumar Krishnamurthy; Vinit Nair; Pedro Rivera; Jonathan Silverstein; Keith Marsolo

doi:10.1186/s13104-022-06243-5

Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnet^®, the National Patient-Centered Clinical Research Network

BMC Res Notes. 2022 Oct 31;15(1):337. doi: 10.1186/s13104-022-06243-5.

Authors

Daniel Kiernan¹, Thomas Carton², Sengwee Toh¹, Jasmin Phua³, Maryan Zirkle⁴, Darcy Louzao⁵, Kevin Haynes⁶, Mark Weiner⁷, Francisco Angulo⁸, Charles Bailey⁹, Jiang Bian¹⁰, Daniel Fort¹¹, Shaun Grannis¹², Ashok Kumar Krishnamurthy¹³, Vinit Nair¹⁴, Pedro Rivera¹⁵, Jonathan Silverstein¹⁶, Keith Marsolo^{17

18}

Affiliations

¹ Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA, 02215, USA.
² Louisiana Public Health Institute, New Orleans, LA, 70112, USA.
³ Datavant, San Francisco, CA, 94104, USA.
⁴ Cohen Veterans Bioscience, New York, NY, 10018, USA.
⁵ Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC, 27710, USA.
⁶ Scientific Affairs, HealthCore, Inc., Wilmington, DE, 19801, USA.
⁷ Department of Medicine, Weill Cornell Medicine, New York, NY, 10021, USA.
⁸ Department of Medicine, Cook County Health and Hospital System, Chicago, IL, 60612, USA.
⁹ Applied Clinical Research Center, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, 19104, USA.
¹⁰ College of Medicine, University of Florida, Gainesville, FL, 32610, USA.
¹¹ Center for Outcomes and Health Services Research, Ochsner Health, New Orleans, LA, 70121, USA.
¹² Regenstrief Institute, Indiana University, Indianapolis, IN, 46202, USA.
¹³ University of North Carolina, Chapel Hill, NC, 27599, USA.
¹⁴ , Sharon, MA, 02067, USA.
¹⁵ OCHIN, Inc., Portland, OR, 97201, USA.
¹⁶ Department of Biomedical Informatics, University of Pittsburgh, Pittsburgh, PA, 15206, USA.
¹⁷ Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC, 27710, USA. keith.marsolo@duke.edu.
¹⁸ Department of Population Health Sciences, Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC, 27710, USA. keith.marsolo@duke.edu.

Abstract

Objective: The aim of this study was to determine whether a secure, privacy-preserving record linkage (PPRL) methodology can be implemented in a scalable manner for use in a large national clinical research network.

Results: We established the governance and technical capacity to support the use of PPRL across the National Patient-Centered Clinical Research Network (PCORnet^®). As a pilot, four sites used the Datavant software to transform patient personally identifiable information (PII) into de-identified tokens. We queried the sites for patients with a clinical encounter in 2018 or 2019 and matched their tokens to determine whether overlap existed. We described patient overlap among the sites and generated a "deduplicated" table of patient demographic characteristics. Overlapping patients were found in 3 of the 6 site-pairs. Following deduplication, the total patient count was 3,108,515 (0.11% reduction), with the largest reduction in count for patients with an "Other/Missing" value for Sex; from 198 to 163 (17.6% reduction). The PPRL solution successfully links patients across data sources using distributed queries without directly accessing patient PII. The overlap queries and analysis performed in this pilot is being replicated across the full network to provide additional insight into patient linkages among a distributed research network.

Keywords: Medical record linkage; Multicenter studies; Patient data privacy.

MeSH terms

Databases, Factual
Electronic Health Records*
Humans
Medical Record Linkage / methods
Patient-Centered Care
Privacy*

Abstract

MeSH terms

Grants and funding