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Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

Lea, NC; Nicholls, J; Dobbs, C; Sethi, N; Cunningham, J; Ainsworth, J; Heaven, M; ... Kalra, D; + view all (2016) Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research. JMIR Medical Informatics , 4 (2) , Article e22. 10.2196/medinform.5571. Green open access

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Abstract

In parallel with the advances in big data-driven clinical research, the data safe haven concept has evolved over the last decade. It has led to the development of a framework to support the secure handling of health care information used for clinical research that balances compliance with legal and regulatory controls and ethical requirements while engaging with the public as a partner in its governance. We describe the evolution of 4 separately developed clinical research platforms into services throughout the United Kingdom-wide Farr Institute and their common deployment features in practice. The Farr Institute is a case study from which we propose a common definition of data safe havens as trusted platforms for clinical academic research. We use this common definition to discuss the challenges and dilemmas faced by the clinical academic research community, to help promote a consistent understanding of them and how they might best be handled in practice. We conclude by questioning whether the common definition represents a safe and trustworthy model for conducting clinical research that can stand the test of time and ongoing technical advances while paying heed to evolving public and professional concerns.

Type: Article
Title: Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research
Location: Canada
Open access status: An open access version is available from UCL Discovery
DOI: 10.2196/medinform.5571
Publisher version: http://dx.doi.org/10.2196/medinform.5571
Language: English
Additional information: Copyright © Nathan Christopher Lea, Jacqueline Nicholls, Christine Dobbs, Nayha Sethi, James Cunningham, John Ainsworth, Martin Heaven, Trevor Peacock, Anthony Peacock, Kerina Jones, Graeme Laurie, Dipak Kalra. Originally published in JMIR Medical Informatics (http://medinform.jmir.org), 21.06.2016. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Medical Informatics, is properly cited.
Keywords: Clinical research support, data safe havens, genomics research support, health record linkage supported research, legislative and regulatory compliance, public engagement, public involvement, trusted research platforms, trusted researchers
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > CHIME
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health
URI: https://discovery.ucl.ac.uk/id/eprint/1501029
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