Working paper Open Access

Improving transparency in the use of health data for research: Recommendations for a data use register standard

Nada Karrar; Shahriar Kabir Khan; Sinduja Manohar; Paola Quattroni; David Seymour; Susheel Varma; The UK Health Data Research Alliance

This paper outlines recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. 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. We are now working with data custodians to support adoption of this standard and improve transparency in data use.

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