We are working to harmonise and simplify data access for healthcare research and to earn public trust in the use of their data. The issues of information governance and public confidence are closely linked and have been brought together by the Alliance in a single Trust and Transparency workstream.
Researchers often state that the difficulty in accessing data is the main barrier to their projects.
Other major obstacles include lack of standardisation and transparency in the access processes and for the use of data.
Tackling this problem would allow faster, better research – speeding up advances in healthcare.
At the same time public involvement needs to be baked into health data research at all levels and stages.
This helps guarantee that research is in the public interest and reassures people that data is being used responsibly and for their benefit.
The Pan-UK Data Governance Steering Group, which represents data custodians, policymakers and public contributors across the four UK nations, is a sub-group of the Alliance and has been set up to simplify and streamline data access governance processes.
The Steering Group has set up Action Forces around transparency standards, mapping data access processes, developing template contracts for data ingress and data access via Trusted Research Environments (TREs) and exploring the challenges in international data access.
A strategic partnership has been formed with the Public Engagement in Data Research Initiative (PEDRI) to develop and spread public involvement and engagement (PIE) best practice among data custodians. The partnership is focussed on exploring PIE priorities and embedding good practice, addressing resource information gaps for researchers and PIE professionals, listening to the public and acting on their concerns.
A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by whom and for what purpose. In March 2022, the Alliance established a working group to help ensure that clear, consistent and standardised public records are regularly published on data use to demonstrate the value and benefit of using health data.
The group has produced recommendations for a data use register (DUR) standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation.
Learn more about this work.
Best practice Transparency Standards (co-developed with HDR UK’s Public Advisory Board (PAB)) have been published. These offer guidance on providing information to the public and researchers about data access processes. Grants have been awarded to help organisations adopt the standards.
The group contributed to the consultation on Information Commissioner’s Office’s (ICO) draft guidance on transparency in the health and social care sector.
The group’s aim is to create a single map of the ethics and governance approvals needed to access administrative and heath data from TREs across the UK.
It has produced a data access map detailing the approvals processes to access data held by Trusted Research Environments (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.
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.
This action force is promoting the adoption and use of the Alliance’s Five Safes data access form, which simplifies the data access application process. It works to overcome challenges and provide training on use of the form. It is also developing transparency standards for Alliance members.
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
The Alliance organised a series of workshops to address the challenges and opportunities associated with utilising linked data for health research in the UK. These sessions aimed to improve accessibility to linked data, streamline data access processes, and enhance collaborations among stakeholders in the UK health data ecosystem.
Alliance members and other contributors are now working with workshop participants to produce an opinion piece to call out for action to maximise the use of linked data for research, moving towards more streamlined and transparent data access mechanisms, with better guidance, resources, and legal toolkits for researchers.
