New paper on data safe havens and trust
30 June 2016
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.
In this new paper, the authors describe the evolution of 4 separately developed clinical research platforms into services throughout the UK-wide Farr Institute and their common deployment features in practice. The Farr Institute is a case study from which the authors propose a common definition of data safe havens as trusted platforms for clinical academic research. This common definition is used 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.
The paper concludes 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.
Lea NC, Nicholls J, Dobbs C, Sethi N, Cunningham J, Ainsworth J, Heaven M, Peacock T, Peacock A, Jones K, Laurie G, Kalra D Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research JMIR Med Inform 2016;4(2):e22. DOI: 10.2196/medinform.5571