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Data safe havens and trust : toward a common understanding of trusted research platforms for governing secure and ethical health research

(2016) JMIR MEDICAL INFORMATICS. 4(2). p.3-14
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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.
Keywords
OPT-OUT, RANDOMIZED-TRIAL, PRIVACY, CONSENT, ACCESS, PERSPECTIVES, INFORMATION, RECRUITMENT, DATABASES, LINKAGE, trusted research platforms, data safe havens, trusted researchers, legislative and regulatory compliance, public engagement, public, involvement, clinical research support, health record linkage supported, research, genomics research support

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Chicago
Lea, Nathan Christopher, Jacqueline Nicholls, Christine Dobbs, Nayha Sethi, James Cunningham, John Ainsworth, Martin Heaven, et al. 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): 3–14.
APA
Lea, N. C., Nicholls, J., Dobbs, C., Sethi, N., Cunningham, J., Ainsworth, J., Heaven, M., et al. (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), 3–14.
Vancouver
1.
Lea NC, Nicholls J, Dobbs C, Sethi N, Cunningham J, Ainsworth J, et al. Data safe havens and trust : toward a common understanding of trusted research platforms for governing secure and ethical health research. JMIR MEDICAL INFORMATICS. 2016;4(2):3–14.
MLA
Lea, Nathan Christopher, Jacqueline Nicholls, Christine Dobbs, et al. “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 (2016): 3–14. Print.
@article{8511659,
  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.},
  author       = {Lea, Nathan Christopher and Nicholls, Jacqueline and Dobbs, Christine and Sethi, Nayha and Cunningham, James and Ainsworth, John and Heaven, Martin and Peacock, Trevor and Peacock, Anthony and Jones, Kerina and Laurie, Graeme and Kalra, Dipak},
  issn         = {2291-9694},
  journal      = {JMIR MEDICAL INFORMATICS},
  keyword      = {OPT-OUT,RANDOMIZED-TRIAL,PRIVACY,CONSENT,ACCESS,PERSPECTIVES,INFORMATION,RECRUITMENT,DATABASES,LINKAGE,trusted research platforms,data safe havens,trusted researchers,legislative and regulatory compliance,public engagement,public,involvement,clinical research support,health record linkage supported,research,genomics research support},
  language     = {eng},
  number       = {2},
  pages        = {3--14},
  title        = {Data safe havens and trust : toward a common understanding of trusted research platforms for governing secure and ethical health research},
  url          = {http://dx.doi.org/10.2196/medinform.5571},
  volume       = {4},
  year         = {2016},
}

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