Data use registers are a key component of improving transparency and trust in the use of health data for research - they allow patients and members of the public to see and feel confident in how patient data is being requested.

The data use register for the UK Renal Registry is publicly available to view on the HDR Innovation Gateway.

To show that only qualified people in secure settings can access our data, and for purposes that benefit the public, the content and structure of individual data uses follows Five Safes Framework. The Five Safes framework is a set of principles which enable data services to provide safe research access to data. The framework originated from the ONS and was developed by them and other data providers in the 2010s. The framework has become best practice in data protection whilst fulfilling the demands of open science and transparency. 

The register implements a national standard for data use registers, developed after wide consultation with data custodians and the public:

Macaulay, Y., UK Health Data Research Alliance, Pan-UK Data Governance Steering Group, HDR UK Public Advisory Board, & Five Safes Action Force. (2023). Pan-UK Data Governance Steering Group Data Access Transparency Standards. Zenodo. https://doi.org/10.5281/zenodo.8262453