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. They can also very useful for researchers and funders to see what datasets have been made available for research.
Until now there have not been any standards for Data Use Registers, making them difficult to access, navigate and review.
To address this issue and in our role as the national institute for health data science, the UK Health Data Research Alliance (The Alliance) has created the first set of recommended standards for Data Use Registers. Read more about these new standards and download the paper.
Alongside the publication of this key White Paper, we are also developing a new tool for data custodians to manage their Data Use Registers on the HDR Innovation Gateway.
Find out more from our experts, data custodians and patients at this event – our first “Data Discovery and Access” session of 2022.
Linking Sensitive Data : Insights from the DARE UK Driver Projects
17 January 2024