Journal article Open Access

Improving transparency in the use of health data for research: Draft recommendations for a data use registers standard

Nada Karrar; Shahriar Kabir Khan; Sinduja Manohar; Paola Quattroni; David Seymour; Susheel Varma

This Green Paper outlines recommendations for data use registers standards to be adopted by data custodian organisations. A data use register (also known as a data release register or list of approved projects) is a public record of how data is being used for research, by who and most importantly for what purpose and offers a demonstration of the value and benefit of using health data. The paper has been drafted following consultations and workshops with numerous organisations including health data research organisations and universities, data custodians and patient and public groups run between 25 March and 13 May 2021. We are now seeking comments and contributions from all stakeholders on the recommendations set out below to help finalise the standards and support adoption.

Note: This paper is published on behalf of the UK Health Data Research Alliance.

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