UK Health Data Research Alliance seeks feedback on a data use registers green paper
12 July 2021
The UK Health Data Research Alliance (the 'Alliance') is delighted to publish its latest Green Paper. It details recommendations for a data use registers standard. A data use register is defined as a public record of data an organisation has provided approved individuals and organisations secure access to for the purpose of research, innovation and service evaluation.
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This Green Paper has been drafted following consultations and workshops with numerous organisations including health data research organisations and universities, data custodians and patient groups, as well as analysis of current data use registers.
Through the recommendations in the Green Paper, we aim to:
Improve transparency in the use of health data for research and innovation
demonstrate the value and benefit of using health data
develop a culture of openness amongst data custodians and researchers
generate better insight into health data usage
build public trust and advocacy for data use
The Alliance is now seeking further feedback and engagement from organisations, the public, researchers and key policy makers regarding opportunities or challenges raised by the recommendations and specification.
Please provide input via the Data Use Registers feedback survey by 20 August 2021. This feedback will then be incorporated into a White Paper following sign off by the Alliance Board in October 2021.