This workstream brings together Alliance members and the wider health data research community to discuss, define and develop standard approaches to Trusted Research Environments (TREs), also known as ‘Data Safe Havens’ or ‘Secure Data Environments’.
TREs are an essential way of managing risk of unauthorised re-identification of individuals from de-identified data. This risk heightens with increased data linkage across a wider range of data sets. To date, most of the focus has been on the people, processes and technology required to deliver effective Information Security.
Our aim is for Alliance TREs to be more than Data Safe Havens by meeting researchers’ technical and functionality requirements both now and in the future, whilst providing confidence to data custodians and the public through implementing a rigorous system of data access based on an evolution of the Five Safes model.
Following a series of workshops and discussions with key stakeholders over the past year, the Alliance published a new paper for organisations that have and are building their TRE.
The paper, which includes a supporting Foreward by NHSX, sets out approach for a trustworthy ecosystem of data access for health research. It acts as a guide for UK data custodians and other organisations proposing principles, approaches and guidelines for data sharing and linkage practice within TREs, as well as examples of best practice drawn from the experiences of colleagues working in the Alliance.
Key milestones in co-creation
|June 2019||Workshop at HDR UK “One Institute” Meeting|
|September 2019||Dedicated workstream established to produce Green Paper|
|January 2020||Draft Green Paper presented to UK Health Data Alliance Board|
|February 2020||Working session at HDR Alliance Symposium|
|April 2020||Presentation of draft Green Paper to HDR Public Advisory Board|
|May 2020||Public consultation on Green Paper launched|
|July 2020||Updated Green Paper published with next steps|
|December 2020||Working session at UK HDR Alliance Symposium (85 attendees)|
|July 2021||Drafting of paper commences|
|December 2021||“Principles and Best Practice” paper published, including|