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.
R for Health Data Science: from clinicians who code to Shiny interventions
27 May 2022 at 10:00 am
Riinu Pius will present on R for Health Data Science: from clinicians who code to Shiny interventions on Friday 27th May at 10:00 UK time. Please click here for more details and to register.
Data Access & Discovery – June
10 June 2022 at 11:00 am
Join us at the next Data Access and Discovery event on Friday 10 June at 11am. Theme: Reproducible Data Science The recent Goldacre review highlighted the importance of reproducibility in data...