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
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...
| Main Authors: | , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-10-01
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| Series: | BMC Research Notes |
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| Online Access: | https://doi.org/10.1186/s13104-022-06243-5 |
| _version_ | 1798044457777496064 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Daniel Kiernan |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-11T23:04:06Z |
| format | Article |
| id | doaj.art-a035d97829424cb59c8b8e4252578654 |
| institution | Directory Open Access Journal |
| issn | 1756-0500 |
| language | English |
| last_indexed | 2024-04-11T23:04:06Z |
| publishDate | 2022-10-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Research Notes |
| spelling | doaj.art-a035d97829424cb59c8b8e42525786542022-12-22T03:58:03ZengBMCBMC Research Notes1756-05002022-10-011511710.1186/s13104-022-06243-5Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnet®, the National Patient-Centered Clinical Research NetworkDaniel Kiernan0Thomas Carton1Sengwee Toh2Jasmin Phua3Maryan Zirkle4Darcy Louzao5Kevin Haynes6Mark Weiner7Francisco Angulo8Charles Bailey9Jiang Bian10Daniel Fort11Shaun Grannis12Ashok Kumar Krishnamurthy13Vinit NairPedro Rivera14Jonathan Silverstein15Keith Marsolo16Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care InstituteLouisiana Public Health InstituteDepartment of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care InstituteDatavantCohen Veterans BioscienceDuke Clinical Research Institute, Duke University School of MedicineScientific Affairs, HealthCore, Inc.Department of Medicine, Weill Cornell MedicineDepartment of Medicine, Cook County Health and Hospital SystemApplied Clinical Research Center, Department of Pediatrics, Children’s Hospital of PhiladelphiaCollege of Medicine, University of FloridaCenter for Outcomes and Health Services Research, Ochsner HealthRegenstrief Institute, Indiana UniversityUniversity of North CarolinaOCHIN, Inc.Department of Biomedical Informatics, University of PittsburghDuke Clinical Research Institute, Duke University School of MedicineAbstract 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.https://doi.org/10.1186/s13104-022-06243-5Medical record linkageMulticenter studiesPatient data privacy |
| spellingShingle | 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 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 Research Notes Medical record linkage Multicenter studies Patient data privacy |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | establishing a framework for privacy preserving record linkage among electronic health record and administrative claims databases within pcornet r the national patient centered clinical research network |
| topic | Medical record linkage Multicenter studies Patient data privacy |
| url | https://doi.org/10.1186/s13104-022-06243-5 |
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