Designing and Implementing a Privacy Preserving Record Linkage Protocol

Introduction The Ontario Brain Institute has developed Brain-CODE, an informatics platform, to support the acquisition, storage, management and analysis of multi-modal data. The standardized research data within Brain-CODE spans several brain disorders, allowing for integrative analyses, while also...

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Main Authors: Tom Gee, Brendan Behan, Shannon Lefaivre, Mahmoud Azimaee, Moyez Dharsee, Khaled El Emam, Julie Yang, Anthony Vaccarino, Kenneth Evans, J. Charles Victor, Elizabeth Theriault
Format: Article
Language:English
Published: Swansea University 2018-09-01
Series:International Journal of Population Data Science
Online Access:https://ijpds.org/article/view/831
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author Tom Gee
Brendan Behan
Shannon Lefaivre
Mahmoud Azimaee
Moyez Dharsee
Khaled El Emam
Julie Yang
Anthony Vaccarino
Kenneth Evans
J. Charles Victor
Elizabeth Theriault
author_facet Tom Gee
Brendan Behan
Shannon Lefaivre
Mahmoud Azimaee
Moyez Dharsee
Khaled El Emam
Julie Yang
Anthony Vaccarino
Kenneth Evans
J. Charles Victor
Elizabeth Theriault
author_sort Tom Gee
collection DOAJ
description Introduction The Ontario Brain Institute has developed Brain-CODE, an informatics platform, to support the acquisition, storage, management and analysis of multi-modal data. The standardized research data within Brain-CODE spans several brain disorders, allowing for integrative analyses, while also providing the opportunity to leverage existing clinical administrative data holdings through external linkages. Objectives and Approach Within Ontario, the majority of individuals who access the healthcare system have a unique identifier, the Ontario Health Insurance Plan (OHIP) number. The OHIP number can facilitate linkages with administrative data holdings, such as those at the Institute for Clinical Evaluative Sciences (ICES). Given that OBI is not permitted under Ontario’s privacy legislation to hold OHIP numbers, identifiers for consented participants are encrypted using a public key mechanism upon entry into Brain-CODE, where the private key is inaccessible. To facilitate linkages involving OHIP numbers between Brain-CODE and ICES, Brain-CODE Link software was co-developed by members of the Indoc Consortium. Results Brain-CODE Link allows a deterministic linkage between encrypted identifiers (OHIP numbers), without revealing participant identity. The same homomorphic encryption algorithm applied to identifiers upon entry to Brain-CODE, is applied to relevant identifiers within ICES data holdings. Encrypted identifiers from Brain-CODE are securely transferred to ICES, where a comparison computation calculates differences between the encrypted sets. These differences are sent to a semi-trusted third party, who has no access to the original data, to decrypt the differences using the private key. A zero difference indicates a set of matching identifiers. One of the main challenges during testing and development of Brain-CODE Link was ensuring the software was capable of scaling to a population level, performing a large number of comparisons, in a computationally efficient manner. Conclusion/Implications Ongoing pilot projects within the areas of epilepsy, neurodevelopment disorders, and neurodegeneration will be the first examples of linkages between Brain-CODE and ICES. Brain-CODE Link has successfully performed several billion test comparisons, indicating its suitability to function as a scalable privacy preserving record linkage to support comprehensive analyses.
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spelling doaj.art-615308d8d0de479b8c086bbe351437542023-12-02T17:08:03ZengSwansea UniversityInternational Journal of Population Data Science2399-49082018-09-013410.23889/ijpds.v3i4.831831Designing and Implementing a Privacy Preserving Record Linkage ProtocolTom Gee0Brendan Behan1Shannon Lefaivre2Mahmoud Azimaee3Moyez Dharsee4Khaled El Emam5Julie Yang6Anthony Vaccarino7Kenneth Evans8J. Charles Victor9Elizabeth Theriault10Indoc ResearchOntario Brain InstituteOntario Brain InstituteInstitute for Clinical Evaluative Sciences (ICES)Indoc ResearchElectronic Health Information LaboratoryInstitute for Clinical Evaluative SciencesIndoc ResearchIndoc ResearchInstitute for Clinical Evaluative SciencesOntario Brain InstituteIntroduction The Ontario Brain Institute has developed Brain-CODE, an informatics platform, to support the acquisition, storage, management and analysis of multi-modal data. The standardized research data within Brain-CODE spans several brain disorders, allowing for integrative analyses, while also providing the opportunity to leverage existing clinical administrative data holdings through external linkages. Objectives and Approach Within Ontario, the majority of individuals who access the healthcare system have a unique identifier, the Ontario Health Insurance Plan (OHIP) number. The OHIP number can facilitate linkages with administrative data holdings, such as those at the Institute for Clinical Evaluative Sciences (ICES). Given that OBI is not permitted under Ontario’s privacy legislation to hold OHIP numbers, identifiers for consented participants are encrypted using a public key mechanism upon entry into Brain-CODE, where the private key is inaccessible. To facilitate linkages involving OHIP numbers between Brain-CODE and ICES, Brain-CODE Link software was co-developed by members of the Indoc Consortium. Results Brain-CODE Link allows a deterministic linkage between encrypted identifiers (OHIP numbers), without revealing participant identity. The same homomorphic encryption algorithm applied to identifiers upon entry to Brain-CODE, is applied to relevant identifiers within ICES data holdings. Encrypted identifiers from Brain-CODE are securely transferred to ICES, where a comparison computation calculates differences between the encrypted sets. These differences are sent to a semi-trusted third party, who has no access to the original data, to decrypt the differences using the private key. A zero difference indicates a set of matching identifiers. One of the main challenges during testing and development of Brain-CODE Link was ensuring the software was capable of scaling to a population level, performing a large number of comparisons, in a computationally efficient manner. Conclusion/Implications Ongoing pilot projects within the areas of epilepsy, neurodevelopment disorders, and neurodegeneration will be the first examples of linkages between Brain-CODE and ICES. Brain-CODE Link has successfully performed several billion test comparisons, indicating its suitability to function as a scalable privacy preserving record linkage to support comprehensive analyses.https://ijpds.org/article/view/831
spellingShingle Tom Gee
Brendan Behan
Shannon Lefaivre
Mahmoud Azimaee
Moyez Dharsee
Khaled El Emam
Julie Yang
Anthony Vaccarino
Kenneth Evans
J. Charles Victor
Elizabeth Theriault
Designing and Implementing a Privacy Preserving Record Linkage Protocol
International Journal of Population Data Science
title Designing and Implementing a Privacy Preserving Record Linkage Protocol
title_full Designing and Implementing a Privacy Preserving Record Linkage Protocol
title_fullStr Designing and Implementing a Privacy Preserving Record Linkage Protocol
title_full_unstemmed Designing and Implementing a Privacy Preserving Record Linkage Protocol
title_short Designing and Implementing a Privacy Preserving Record Linkage Protocol
title_sort designing and implementing a privacy preserving record linkage protocol
url https://ijpds.org/article/view/831
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