The COVID-19 pandemic has demonstrated the power of using data for research and raised public awareness. It has also raised questions on the use of sensitive data and the potential risks to individual privacy that can undermine public trust in data use. Transparency in how health and social care data is used by researchers and innovators is crucial to building public trust.
A data use register is a public record of the data an organisation has shared with others for the purpose of research, innovation and service evaluation. However, the information currently available is difficult to access, inconsistent and lacks standardisation across organisations.
The Alliance proposes a new standard for data use registers that increases transparency of how and why data is accessed. It also proposes a solution for implementation of these standards via the Gateway.
The current challenge is that many data use registers are difficult to access, inconsistent in content and form and in some cases not available to the public. Identifying outcomes and outputs derived from the use of data is also difficult. The public, researchers and funders would all benefit from a clear mechanism that highlights research projects using data and the outputs derived from those projects.
The Alliance proposes a minimum standard for data use registers that all organisations responsible for providing access to data can adopt. The paper Improving transparency in the use of health data for research: a data use registers standard outlines four recommendations focussing on content, format and frequency of publication.
The standard proposed has also informed the development of a data use register in the Innovation Gateway, to improve transparency of data uses for datasets made discoverable by Alliance members through the portal.
Impact and outcomes
The Alliance hosted workshops and conducted many interviews and surveys with data custodians, researchers, funders, policy makers and the public. More than 100 people from nearly 50 organisations participated in the discussion and contributed to this work.
In May 2021, the Alliance conducted an analysis of data use registers published by health data custodians in the UK. This provided us with valuable insight into the practices of data controllers and custodians with established data use registers, as well as baseline to measure the impact of this work.
Of the 46 Alliance members analysed 48% (22) had data use registers that were discoverable via public websites. As of November 2021, we are already seeing a change in practice, with 34 out of 67 Alliance members having data use registers that are discoverable via public websites and some starting to adopt the 4 standards. Of note, following publication of a green paper, NHS Digital renamed their register to align with our recommendations.
PPIE, Training, Knowledge Transfer, Team Science, and Open Science
A public consultation of the recommendations was held in July, of which a summary can be found here. The recommendations have received widespread support with 93% of respondents endorsing them in the Community response to the green paper. The majority of responses were from lay representatives. 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
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