For organisations responsible for owning, storing, and providing access to health data for research (often referred to as “data custodians”), the publication of “a data use register” is an opportunity to be transparent about how the data they hold are used. However, many data use registers are difficult to access, inconsistent in content and, in some cases, not available to the public.
A data use register (also referred to as “list of approved studies”) is a public record of data that an organisation has provided approved individuals and organisations with access to for the purpose of research. Data use registers can also include a direct link to research outputs, providing a demonstration of the value and impact of using health data.
To encourage improvements in quality and standardisation of data use registers, the UK Health Data Research Alliance (the Alliance) has today published a White Paper “Improving transparency in the use of health data for research: Recommendations for a data use register standard”.
This paper provides recommendations for a data use register standard and has been developed with the generous input from many groups, including researchers, data custodians, funders, policy makers and most notably the public. More than 100 people contributed to the standards, including 75 members of the public, the HDR UK Public Advisory Board, and over 50 health data organisations.
This publication is also a call to action to data custodians and controllers to improve the way they communicate how data is used. Adoption of this standard will be critical in building public confidence and demonstrating a trustworthy approach to the public in how their data are being used.
To find out more about why data use registers are a crucial component of improving trust and transparency in the use of health data for research, please join us at our webinar at 11.00am on 10 February.
If you are a data custodian interested in joining UK Health Data Research Alliance, please contact: Paola Quattroni, Head of Alliance Strategy and Engagement
Paola Quattroni, Head of Alliance Strategy and Engagement:
“For the first time, the UK’s custodians of health data have a consistent framework to support their development and publications of data use registers. The adoption of these standards will increase alignment of registers, delivering on our ambition to create consistent approaches to the use of health data across the UK.”
“This form of public accountability is essential and should be a requirement for all data custodians.”
University Hospitals Birmingham NHS Trust:
“Transparency is key to ensure public trust in the appropriate use of their data.”
David Nicholson, Policy Officer at the Wellcome Sanger Institute:
“Data use registers that maximise the reusability of scientific data in line with the FAIR principles should be adopted by all health data custodians. Data use registers have the potential to drive research forward by allowing scientists to identify research gaps or find new collaborations.”
In the coming weeks, the Alliance, with support from Health Data Research UK, will build on the publication of this White Paper through:
- The development of a data use register for the Health Data Research Innovation Gateway (“The Gateway”), to improve transparency of uses for datasets made discoverable on the Gateway. This register will directly implement the new standard and provide an example of good practice in how information about approved data uses can be managed and shared.
- The Alliance will support member organisations to develop their data use registers to achieve at least the minimum data elements outlined in the recommendations.
- Data custodians without the infrastructure to develop their own data use register will be encouraged and supported to publish their data uses on the Gateway register, when available.
A collaborative effort
The publication of the White Paper is the culmination of thorough and collaborative process, with substantial contribution from across the UK health data research sector, including more than 50 organisations, Alliance members and 75 public contributors.
It incorporates valuable insights and feedback gathered through a period of consultation that included an open survey and several meetings and focus groups with various stakeholders, representing health data research bodies, universities, data custodians, patients and members of the public.
The paper builds on a Green Paper published in July 2021, which was itself initiated through the work of the Public Advisory Board of HDR UK.
The White Paper on data use registers follows publication of papers in recent weeks on improving and standardising approaches on Data Utility and Trusted Research Environments.