The subgroups of the Pan-UK Data Governance Steering Group creating useable outputs and directing change
Four ‘Action Forces’ have been set up to take forward priority areas of the Pan UK Data Governance Steering Group. Members of the action forces have been nominated by the Steering Group and all four groups have meaningful patient and public involvement. The aims of the action forces are as follows:
Mapping Data Governance Processes
The group’s aim is to create a single map of the ethics and governance approvals needed to access administrative and heath data from Trusted Research Environments (TREs) across the UK.
It has produced a data access map detailing the approvals processes to access data held by TREs in each of the home nations. There is also a comparison tool showing each step of the access process in more detail and giving access to advice and guidance to each of the home nations. The map is available here.
Developing a TRE Legal Toolkit
The Action Force is working to define the data protection roles and responsibilities of all parties involved in TRE data access and to streamline contractual arrangements, so that research in the public benefit is not delayed unnecessarily in the legal review process, whilst robust and standardised controls are upheld.
The aim is to produce a toolkit of template resources to speed up contracting and ensure all parties are aware of their obligations. A paper on the principles underpinning data access has been published and a template TRE Data Access Agreement (DAA) is now available.
‘Five Safes’ Form adoption and training
This Action Force is promoting the adoption and use of the Alliance’s Five Safes data access form, which simplifies and streamlines the data access application process. The group works to overcome challenges and provide training on use of the form.
This action force also developed the Transparency Standards (co-developed with HDR UK’s Public Advisory Board (PAB)) for best practice for transparency in data use for research. The Transparency Standards offer guidance on providing information to the public and researchers about data access processes. Grants have been awarded to help organisations adopt the standards.
International Data Access
This group is focused on the legal challenges relating to international data sharing and its aim is to produce outputs to drive clarity in this area.
For more information about this group and other action forces contact InformationGovernance@hdruk.ac.uk
