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

Graeme Laurie, Nathan Lea, Nicholls Jacqueline , Christine Dobbs, Nayha Sethi, James Cunningham, John Ainsworth, Martin Heaven, Trevor Peacock, Anthony Peacock, Kerina Jones, Dipak Kalra

Research output: Contribution to journalArticlepeer-review

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.
Original languageEnglish
Pages (from-to)e22
JournalJMIR Medical Informatics
Volume4
Issue number2
DOIs
Publication statusPublished - 21 Jun 2016

Keywords

  • safe havens
  • privacy
  • data
  • health research
  • health records
  • consent

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