Innovative Data Governance Frontiers meeting
4th November 2022
Convening a multidisciplinary group, including academic researchers, scientists, NHS colleagues, representatives from industry, government, media and legal professionals and patient and public representatives, allowed diversity in a shared vision to tackle the challenge of simplifying and streamlining data access governance processes.
Speakers and contributors set the scene of current challenges around the processes and times for data access. The meeting conveners (Andy Boyd, Director, Longitudinal Link Collaboration and Cassie Smith, Head of Legal, Trust & Ethics, HDR UK) provided an update on actions and priorities arising out of the Pan-UK Data Governance Steering Group, working with collaborators across the four nations. The meeting generated a resounding agreement to further the development of robust, transparent, and trustworthy streamlined data access governance models to enable data-driven discoveries which will improve people’s lives.
Attendees joined this hybrid event both in person at the Wellcome Trust and online via Zoom.
Below you can view the welcome address delivered by Sir Patrick Vallance, UK Government Chief Scientific Adviser.
The Data Access and Governance work of the Alliance is being delivered via the pan-UK Data Governance Steering Group, which is a working group of the Alliance representing data custodians and policymakers across the four nations. The Steering Group is focused on simplifying and streamlining data access governance processes.
Researchers consistently cite difficulties in obtaining access to data as the primary blocker to research productivity.
Lack of robust, transparent, standardised, and accessible processes, guidance and training for granting data access causes significant challenges and delays to sharing of data, linkage, and wider access.
Data access application and approval processes vary considerably across data custodians and can be slow and challenging to navigate.
Simplifying and streamlining data access governance processes across data custodians in the four nations of the UK therefore has the potential to dramatically speed up data access, make the process less burdensome and more predictable for researchers and enable vital research to improve and save lives.
Pan-UK Data Governance Steering Group
The pan-UK Data Governance Steering Group is a working group of the Alliance which represents data custodians and policymakers across the four nations. The objectives of the group are:
- To design and promote innovative and streamlined data governance approaches that facilitate faster and more predictable researcher access to data.
- To focus development and evaluation of these approaches in Trusted Research Environments (TREs).
- To adopt a collaborative, transparent, cross-cutting, inclusive approach, building on existing best practice in the UK and internationally to facilitate broad and open engagement in design of governance processes.
The group shall endeavour to identify the principles that should guide data access/sharing as well as instances of best practices drawn from the experiences of colleagues working across the UK, taking into account the evidence of public involvement and engagement.
The group is cross-sector, including representatives from the health research and administrative research communities. By bringing together cross-sectoral expertise we can learn from one another and start to facilitate alignment between processes for accessing administrative data, health and care service data and study data, utilising previous work where possible.
Commitment to Public Involvement and Engagement
Members of the pan-UK Data Governance Steering Group are committed to meaningful public, patient and practitioner involvement and engagement (PPIE) to enable us to build governance models on a foundation of deserved public trust.
The Steering Group includes two public representatives, and we will partner closely with the HDR UK Public and Patient Involvement and Engagement (PPIE) team to facilitate broad and meaningful public involvement in all aspects of the Steering Group’s work.
Pan-UK Data Governance Steering Group Membership
Meeting 21/04/2022 Download here
Meeting 04/07/2022 Download here
Three ‘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 three groups have meaningful patient and public involvement. The aims of the action forces are as follows:
- Mapping Data Governance Processes
Creation of a single map of ethics and governance approvals needed to access and link data, covering the four nations, ethics and governance approvals, administrative and heath data, and links to resources.
- Developing a TRE Legal Toolkit
Creation of standardised legal agreements, including a Data Depositing Agreement (DDA), Data Access Agreement (DAA), Data Protection Impact Assessment (DPIA) and associated guidance. The group will define roles and responsibilities between data custodians, data processors and data researchers to add clarity and consistency across contractual arrangements and provide a toolkit that is easy to use and understand. This should speed up contracting within institutions and reduce the administrative burden on researchers.
- ‘Five Safes’ Form adoption and training
Promoting the increased adoption and use of the ‘Five Safes’ data access form developed by the Alliance. In understanding and overcoming the challenges in adoption and providing training in the use of the form, this should simplify the data access application process for the research community. Training will encourage high quality applications that can be reviewed by data custodians without undue delay.
Contact for the action forces: InformationGovernance@hdruk.ac.uk