Background 

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.  

Analysis of data use registers published by health data custodians in the UK 

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.  

Related resources 

If you are interested in this work and would like to be involved, please email ukalliance@hdruk.ac.uk 

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