학술논문
Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments.
Document Type
Academic Journal
Author
Brophy R; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Bellavia E; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Bluemink MG; Our Future Health, 2 New Bailey, 6 Stanley Street, Manchester M3 5GS.; Evans K; UK Longitudinal Linkage Collaboration, University of Bristol, Canynge Hall, Clifton, Bristol, BS8 2PS.; Hashimi M; On behalf of the HDR UK Public Advisory Board.; Macaulay Y; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; McNamara E; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Noble A; Research Data Scotland, Bayes Centre, 47 Potterrow, Edinburgh, EH8 9BT.; Quattroni P; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Rudczenko A; On behalf of the HDR UK Public Advisory Board.; Morris AD; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Smith C; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; Boyd A; Health Data Research UK, Gibbs Building, 215 Euston Road, London, NW1 2BE.; UK Longitudinal Linkage Collaboration, University of Bristol, Canynge Hall, Clifton, Bristol, BS8 2PS.
Source
Publisher: Swansea University Country of Publication: Wales NLM ID: 101737740 Publication Model: eCollection Cited Medium: Internet ISSN: 2399-4908 (Electronic) Linking ISSN: 23994908 NLM ISO Abbreviation: Int J Popul Data Sci Subsets: MEDLINE
Subject
Language
English
Abstract
Introduction: Trusted Research Environments (TREs) are secure computing environments that provide access to data for approved researchers to use in studies that can save and improve lives. TREs rely on Data Access Agreements (DAAs) to bind researchers and their organisations to the terms and conditions of accessing the infrastructure and data use. However, DAAs can be overly lengthy, complex, and can contain outdated terms from historical data sharing agreements for physical exchange of data. This is often cited as a cause of significant delays to legal review and research projects starting.
Objectives: The aim was to develop a standardised DAA optimised for data science in TREs across the UK and framed around the 'Five Safes framework' for trustworthy data use. The DAA is underpinned by principles of data access in TREs, the development of which is described in this paper.
Methods: The Pan-UK Data Governance Steering Group of the UK Health Data Research Alliance led the development of a core set of data access principles. This was informed by a benchmarking exercise of DAAs used by established TREs and consultation with public members and stakeholders.
Results: We have defined a core set of principles for TRE data access that can be mapped to a common set of DAA terms for UK-based TREs. Flexibility will be ensured by including terms specific to TREs or specific data/data owners in customisable annexes. Public views obtained through public involvement and engagement (PIE) activities are also reported.
Conclusions: These principles provide the foundation for a standardised UK TRE DAA template, designed to support the growing ecosystem of TREs. By providing a familiar structure and terms, this template aims to build trust among data owners and the UK public and to provide clarity to researchers on their obligations to protect the data. Widespread adoption is intended to accelerate health data research by enabling faster approval of projects, ultimately enabling more timely and effective research.
Competing Interests: Statement on conflicts of Interest: None declared.
Objectives: The aim was to develop a standardised DAA optimised for data science in TREs across the UK and framed around the 'Five Safes framework' for trustworthy data use. The DAA is underpinned by principles of data access in TREs, the development of which is described in this paper.
Methods: The Pan-UK Data Governance Steering Group of the UK Health Data Research Alliance led the development of a core set of data access principles. This was informed by a benchmarking exercise of DAAs used by established TREs and consultation with public members and stakeholders.
Results: We have defined a core set of principles for TRE data access that can be mapped to a common set of DAA terms for UK-based TREs. Flexibility will be ensured by including terms specific to TREs or specific data/data owners in customisable annexes. Public views obtained through public involvement and engagement (PIE) activities are also reported.
Conclusions: These principles provide the foundation for a standardised UK TRE DAA template, designed to support the growing ecosystem of TREs. By providing a familiar structure and terms, this template aims to build trust among data owners and the UK public and to provide clarity to researchers on their obligations to protect the data. Widespread adoption is intended to accelerate health data research by enabling faster approval of projects, ultimately enabling more timely and effective research.
Competing Interests: Statement on conflicts of Interest: None declared.