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Common governance model: a way to avoid data segregation between existing trusted research environment

Fatemeh Torabi Orcid Logo, Chris Orton Orcid Logo, Emma Squires, Sharon Heys, Richard Hier, Ronan Lyons, Simon Ellwood-Thompson

International Journal of Population Data Science, Volume: 8, Issue: 4

Swansea University Authors: Fatemeh Torabi Orcid Logo, Chris Orton Orcid Logo, Emma Squires, Sharon Heys, Richard Hier, Ronan Lyons, Simon Ellwood-Thompson

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DOI (Published version): 10.23889/ijpds.v8i4.2164

Abstract

Background: Trusted Research Environments provide a legitimate basis for data access along with a set of technologies to support implementation of the "five-safes" framework for privacy protection. Lack of standard approaches in achieving compliance with the "five-safes" framewor...

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Published in: International Journal of Population Data Science
ISSN: 2399-4908
Published: Swansea University 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa71653
first_indexed 2026-03-20T07:01:27Z
last_indexed 2026-04-21T07:36:03Z
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Lack of standard approaches in achieving compliance with the "five-safes" framework results in a diversity of approaches across different TREs. Data access and analysis across multiple TREs has a range of benefits including improved precision of analysis due to larger sample sizes and broader availability of out-of-sample records, particularly in the study of rare conditions. Knowledge of governance approaches used across UK-TREs is limited. Objective: To document key governance features in major UK-TRE contributing to UK wide analysis and to identify elements that would directly facilitate multi TRE collaborations and federated analysis in future. Method: We summarised three main characteristics across 15 major UK-based TREs: 1) data access environment; 2) data access requests and disclosure control procedures; and 3) governance models. We undertook case studies of collaborative analyses conducted in more than one TRE. We identified an array of TREs operating on an equivalent level of governance. We further identify commonly governed TREs with architectural considerations for achieving an equivalent level of information security management system standards to facilitate multi TRE functionality and federated analytics. Results: All 15 UK-TREs allow pooling and analysis of aggregated research outputs only when they have passed human-operated disclosure control checks. Data access requests procedures are unique to each TRE. We also observed a variability in disclosure control procedures across various TREs with no or minimal researcher guidance on best practices for file out request procedures. In 2023, six TREs (40.0%) held ISO 20071 accreditation, while 9 TREs (56.2%) participated in four-nation analyses. Conclusion: Secure analysis of individual-level data from multiple TREs is possible through existing technical solutions but requires development of a well-established governance framework meeting all stakeholder requirements and addressing public and patient concerns. Formation of a standard model could act as the catalyst for evolution of current TREs governance models to a multi TRE ecosystem within the UK and beyond.</abstract><type>Journal Article</type><journal>International Journal of Population Data Science</journal><volume>8</volume><journalNumber>4</journalNumber><paginationStart/><paginationEnd/><publisher>Swansea University</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2399-4908</issnElectronic><keywords>data governance; Trusted Research Environments; data protection</keywords><publishedDay>8</publishedDay><publishedMonth>11</publishedMonth><publishedYear>2023</publishedYear><publishedDate>2023-11-08</publishedDate><doi>10.23889/ijpds.v8i4.2164</doi><url/><notes/><college>COLLEGE NANME</college><department>Medical School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>MEDS</DepartmentCode><institution>Swansea University</institution><apcterm>Other</apcterm><funders>This work has been funded by Dementia Platform UK 2 &#x2013;integrated Dementia Experimental Medicine MR/T033371/1.</funders><projectreference/><lastEdited>2026-04-20T14:13:03.3726573</lastEdited><Created>2026-03-19T23:24:40.0458774</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Fatemeh</firstname><surname>Torabi</surname><orcid>0000-0002-5853-4625</orcid><order>1</order></author><author><firstname>Chris</firstname><surname>Orton</surname><orcid>0000-0002-9561-2493</orcid><order>2</order></author><author><firstname>Emma</firstname><surname>Squires</surname><orcid/><order>3</order></author><author><firstname>Sharon</firstname><surname>Heys</surname><orcid/><order>4</order></author><author><firstname>Richard</firstname><surname>Hier</surname><order>5</order></author><author><firstname>Ronan</firstname><surname>Lyons</surname><orcid/><order>6</order></author><author><firstname>Simon</firstname><surname>Ellwood-Thompson</surname><orcid/><order>7</order></author></authors><documents><document><filename>71653__36536__8830a4ad0cf14efd83702d6cdb4a3e16.pdf</filename><originalFilename>71653.VoR.pdf</originalFilename><uploaded>2026-04-20T14:10:56.9640032</uploaded><type>Output</type><contentLength>791431</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>2023 &#xA9; The Authors. 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spelling 2026-04-20T14:13:03.3726573 v2 71653 2026-03-19 Common governance model: a way to avoid data segregation between existing trusted research environment f569591e1bfb0e405b8091f99fec45d3 0000-0002-5853-4625 Fatemeh Torabi Fatemeh Torabi true false 555c622e1f7bd9d2e0341f2ebbfd3e7f 0000-0002-9561-2493 Chris Orton Chris Orton true false 0088b5b395a477d268ce487544ea4738 Emma Squires Emma Squires true false 61f095d8f6942db1b4fd65e2053091f5 Sharon Heys Sharon Heys true false 0d02f4d3b0ea0e55ad7388f201b84bb8 Richard Hier Richard Hier true false 83efcf2a9dfcf8b55586999d3d152ac6 Ronan Lyons Ronan Lyons true false 6498256ca5bc432bd9626503f1019113 Simon Ellwood-Thompson Simon Ellwood-Thompson true false 2026-03-19 MEDS Background: Trusted Research Environments provide a legitimate basis for data access along with a set of technologies to support implementation of the "five-safes" framework for privacy protection. Lack of standard approaches in achieving compliance with the "five-safes" framework results in a diversity of approaches across different TREs. Data access and analysis across multiple TREs has a range of benefits including improved precision of analysis due to larger sample sizes and broader availability of out-of-sample records, particularly in the study of rare conditions. Knowledge of governance approaches used across UK-TREs is limited. Objective: To document key governance features in major UK-TRE contributing to UK wide analysis and to identify elements that would directly facilitate multi TRE collaborations and federated analysis in future. Method: We summarised three main characteristics across 15 major UK-based TREs: 1) data access environment; 2) data access requests and disclosure control procedures; and 3) governance models. We undertook case studies of collaborative analyses conducted in more than one TRE. We identified an array of TREs operating on an equivalent level of governance. We further identify commonly governed TREs with architectural considerations for achieving an equivalent level of information security management system standards to facilitate multi TRE functionality and federated analytics. Results: All 15 UK-TREs allow pooling and analysis of aggregated research outputs only when they have passed human-operated disclosure control checks. Data access requests procedures are unique to each TRE. We also observed a variability in disclosure control procedures across various TREs with no or minimal researcher guidance on best practices for file out request procedures. In 2023, six TREs (40.0%) held ISO 20071 accreditation, while 9 TREs (56.2%) participated in four-nation analyses. Conclusion: Secure analysis of individual-level data from multiple TREs is possible through existing technical solutions but requires development of a well-established governance framework meeting all stakeholder requirements and addressing public and patient concerns. Formation of a standard model could act as the catalyst for evolution of current TREs governance models to a multi TRE ecosystem within the UK and beyond. Journal Article International Journal of Population Data Science 8 4 Swansea University 2399-4908 data governance; Trusted Research Environments; data protection 8 11 2023 2023-11-08 10.23889/ijpds.v8i4.2164 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University Other This work has been funded by Dementia Platform UK 2 –integrated Dementia Experimental Medicine MR/T033371/1. 2026-04-20T14:13:03.3726573 2026-03-19T23:24:40.0458774 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Fatemeh Torabi 0000-0002-5853-4625 1 Chris Orton 0000-0002-9561-2493 2 Emma Squires 3 Sharon Heys 4 Richard Hier 5 Ronan Lyons 6 Simon Ellwood-Thompson 7 71653__36536__8830a4ad0cf14efd83702d6cdb4a3e16.pdf 71653.VoR.pdf 2026-04-20T14:10:56.9640032 Output 791431 application/pdf Version of Record true 2023 © The Authors. Open Access under CC BY 4.0. true eng https://creativecommons.org/licenses/by/4.0/deed.en
title Common governance model: a way to avoid data segregation between existing trusted research environment
spellingShingle Common governance model: a way to avoid data segregation between existing trusted research environment
Fatemeh Torabi
Chris Orton
Emma Squires
Sharon Heys
Richard Hier
Ronan Lyons
Simon Ellwood-Thompson
title_short Common governance model: a way to avoid data segregation between existing trusted research environment
title_full Common governance model: a way to avoid data segregation between existing trusted research environment
title_fullStr Common governance model: a way to avoid data segregation between existing trusted research environment
title_full_unstemmed Common governance model: a way to avoid data segregation between existing trusted research environment
title_sort Common governance model: a way to avoid data segregation between existing trusted research environment
author_id_str_mv f569591e1bfb0e405b8091f99fec45d3
555c622e1f7bd9d2e0341f2ebbfd3e7f
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61f095d8f6942db1b4fd65e2053091f5
0d02f4d3b0ea0e55ad7388f201b84bb8
83efcf2a9dfcf8b55586999d3d152ac6
6498256ca5bc432bd9626503f1019113
author_id_fullname_str_mv f569591e1bfb0e405b8091f99fec45d3_***_Fatemeh Torabi
555c622e1f7bd9d2e0341f2ebbfd3e7f_***_Chris Orton
0088b5b395a477d268ce487544ea4738_***_Emma Squires
61f095d8f6942db1b4fd65e2053091f5_***_Sharon Heys
0d02f4d3b0ea0e55ad7388f201b84bb8_***_Richard Hier
83efcf2a9dfcf8b55586999d3d152ac6_***_Ronan Lyons
6498256ca5bc432bd9626503f1019113_***_Simon Ellwood-Thompson
author Fatemeh Torabi
Chris Orton
Emma Squires
Sharon Heys
Richard Hier
Ronan Lyons
Simon Ellwood-Thompson
author2 Fatemeh Torabi
Chris Orton
Emma Squires
Sharon Heys
Richard Hier
Ronan Lyons
Simon Ellwood-Thompson
format Journal article
container_title International Journal of Population Data Science
container_volume 8
container_issue 4
publishDate 2023
institution Swansea University
issn 2399-4908
doi_str_mv 10.23889/ijpds.v8i4.2164
publisher Swansea University
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str 0
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description Background: Trusted Research Environments provide a legitimate basis for data access along with a set of technologies to support implementation of the "five-safes" framework for privacy protection. Lack of standard approaches in achieving compliance with the "five-safes" framework results in a diversity of approaches across different TREs. Data access and analysis across multiple TREs has a range of benefits including improved precision of analysis due to larger sample sizes and broader availability of out-of-sample records, particularly in the study of rare conditions. Knowledge of governance approaches used across UK-TREs is limited. Objective: To document key governance features in major UK-TRE contributing to UK wide analysis and to identify elements that would directly facilitate multi TRE collaborations and federated analysis in future. Method: We summarised three main characteristics across 15 major UK-based TREs: 1) data access environment; 2) data access requests and disclosure control procedures; and 3) governance models. We undertook case studies of collaborative analyses conducted in more than one TRE. We identified an array of TREs operating on an equivalent level of governance. We further identify commonly governed TREs with architectural considerations for achieving an equivalent level of information security management system standards to facilitate multi TRE functionality and federated analytics. Results: All 15 UK-TREs allow pooling and analysis of aggregated research outputs only when they have passed human-operated disclosure control checks. Data access requests procedures are unique to each TRE. We also observed a variability in disclosure control procedures across various TREs with no or minimal researcher guidance on best practices for file out request procedures. In 2023, six TREs (40.0%) held ISO 20071 accreditation, while 9 TREs (56.2%) participated in four-nation analyses. Conclusion: Secure analysis of individual-level data from multiple TREs is possible through existing technical solutions but requires development of a well-established governance framework meeting all stakeholder requirements and addressing public and patient concerns. Formation of a standard model could act as the catalyst for evolution of current TREs governance models to a multi TRE ecosystem within the UK and beyond.
published_date 2023-11-08T08:28:19Z
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