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 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.

PMID: 36316778
PMCID: PMC9620597
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

Daniel Kiernan et al. BMC Res Notes. 2022.

. 2022 Oct 31;15(1):337.

doi: 10.1186/s13104-022-06243-5.

Authors

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.

PMID: 36316778
PMCID: PMC9620597
DOI: 10.1186/s13104-022-06243-5

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.

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Conflict of interest statement

JP is employed by Datavant, which provides software for privacy-preserving record linkage. The remaining authors have no competing interests to declare.

Figures

**Fig. 1**
This process flow represents the records adjudication steps performed to de-duplicate records with patients with a common “Match_ID”. “MATCH_ID” is generated by the Datavant software and each represents a unique patient. “DMID_PATID” is the internal DM pseudoidentifier (but does not contain patient identifiers). “Age_Group” is the age category assigned to the patient based on patient age. “Sex” includes example Male and Female values from the PCORnet CDM. “Race” includes example values from the PCORnet CDM, where 01 = American Indian or Alaska Native, 03 = Black or African American, and 05 = White

See this image and copyright information in PMC

References

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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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources