A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by whom and most importantly for what purpose. The April 2021 report ‘Putting Good into Practice’ by the National Data Guardian and Understanding Patient Data highlighted that ‘transparency is required throughout the whole data life cycle, not just at the point of application’. National bodies also have a legal obligation to make this information publicly available. Publishing this information in an accessible and understandable format helps organisations demonstrate trustworthiness and, we hope, increase advocacy for data use.
By establishing a core set of information on whom, how and why data is accessed, we hope to demonstrate the value and benefit of using health data, develop a culture of openness amongst data custodians and researchers, and generate better insight into health data usage.
Progress to date
Widespread community involvement and engagement
The Alliance has hosted a series of workshops, focus groups, interviews and surveys with data custodians, researchers, funders, policy makers and citizens. Over 100 representatives from nearly 50 organisations have been consulted and contributed to recommendations for a data use register standard.
Our research on the current state of data use registers has provided valuable insight into the practices of data controllers and custodians with established data use registers. Forty-six data custodians and controllers from the Alliance and seven non-Alliance members were included in this review. For more details on the results of this analysis, please read the preprint published in May 2021. You can also find links to organisational Data Use Registers here.
Consultation on Green Paper for data use register standards
In July 2021, the Alliance set out draft recommendations for a data use register standard, which went out for consultation via an online survey. These recommendations have received widespread support with 93% of respondents endorsing them in the Community response to the Green Paper. The high level of interest and input from lay representatives highlights the need for transparency and the importance of involving the public in all stages of the data-driven research cycle.
Development of data use register for the Innovation Gateway
The Health Data Research Innovation Gateway is a portal for data discovery and access. The recommendations outlined in the Data use register Green Paper directly informed the development of a Gateway data use register that will improve transparency of data uses for datasets made discoverable by Alliance members through the portal. This register is intended to provide an example of good practice in how information about approved data uses is shared and managed. It will also enable aggregation of data uses across different custodians. Data custodians without the infrastructure to develop their own data use register will be able to benefit from a platform to publish this information.
Launch of the register is scheduled for January 2022.
- Links to organisational data use registers
- Health Research Authority: Make it Public
- National Data Guardian: Putting Good into Practice
- Five Safes: Designing data access for research
- Preprint on analysis of data use registers published by health data custodians in the UK
- Green Paper on recommendations for data use register standard published
- Community response to the Green Paper
If you are interested in this work and would like to be involved, please email firstname.lastname@example.org
Organisations contributing to development of recommendations and consultation
|Anglia Ruskin University||Imperial College London||Public Health Scotland|
|Beat Kidney Stones||Imperial College London Neonatal Data Analysis Unit||QResearch|
|BHF Data Science Centre||Independent / HDR-UK / Genomics England||Queen Mary University|
|Bristol University||Institute of Cancer Research||Roche|
|Cancer Research UK||King’s College London||SAIL Databank|
|Cardiff University||Lancaster University||SPNFT|
|City, University of London||London Hazards Centre||St. Bartholomew’s Hospital|
|Clinical Practice Research Datalink (CPRD)||MedConfidential||The Brain Tumour Charity|
|DATA-Can Health Data Research Hub||Medical Research Council||The Renal Registry|
|Edinburgh University||Moorfields NHS FT||UCL and Ixico plc|
|Flat Iron||MRC CTU at UCL||University College London|
|Great Ormond Street Hospital NHS Trust||NHS Digital||University Hospitals Birmingham NHS Trust|
|Gut Reaction Health Data Research Hub||NHSX||University of Dundee|
|Guys and St Thomas NHS Foundation Trust||NIHR BioResource||University of Nottingham|
|HDR UK Cambridge Understanding Causes of Disease||NI Cancer Research Consumer Forum (NICRCF)||University of South Wales|
|Health and Social Care Northern Ireland||Nottingham University Hospitals NHS Trust||University of St Andrew|
|Health Research Authority||Nottinghamshire Healthcare NHS Foundation Trust||University of Warwick|
|HIC – The University of Dundee||Our Future Health||use MY data|
|HQIP||Oxford University Hospitals NHS Foundation Trust||Usher Institute, University of Edinburgh|
|Human Fertilisation & Embryology Authority||Patient & Public Involvement Panel||Wellcome Sanger Institute|
|Imperial College Healthcare NHS Trust||Public Health England|