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

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

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

Abstract

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.

Keywords

data use; health data; transparency

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selected citations
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This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
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popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
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