The Pan-UK Data Governance Steering Group 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 and guidance 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.
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:
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.
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 three public representatives, and is partnered 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.
Steering Group Meeting 09/10/2023 Download here
Steering Group Meeting NHSE Value Sharing Framework 06/09/2023 Download here
Steering Group Meeting 21/06/2023 Download here
Steering Group Meeting 24/02/2023 Download here
Frontiers Meeting 04/11/2022 Download here
Meeting 21/04/2022 Download here
Meeting 04/07/2022 Download here
Meeting 24/02/2023 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:
The aim is to create of a single map of ethics and governance approvals needed to access data within TRE covering the four nations, ethics and governance approvals, administrative and heath data. This Action Force has created the Data Access Map which highlights the complexity in this area and shows the interplay between the various approval processes.
This Action Force is creating resources for data access in TRE/SDEs (including Data Depositing Agreement (DDA), Data Access Agreement (DAA), Data Protection Impact Assessment (DPIA)). The group has made significant process towards defining 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.
The current focus is on a template DAA which has been mapped against the Five Safes Framework and based on principles the group established for contracting for data access in TREs.
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. The group has noted that transparency of data access forms is a significant challenge that needs to be overcome in order to build and maintain public trust. This Action force is now developing transparency standards that can be implemented by members.
Contact for the action forces: InformationGovernance@hdruk.ac.uk
| Name | Organisation |
| Janet Valentine | ABPI |
| Emma Gordon | Administrative Data Research UK (ADR UK) |
| Kirsty Irvine | Advisory Group for Data, NHS E |
| James Hetherington | Alan Turing Institute |
| Peter Stokes | Bennett Institute |
| Neena Modi | British Medical Association (BMA) |
| Sue Bateman | Central Digital and Data Office/ Government Digital Service |
| Hans-Erik Aronson | Data and Analytics Research Environments UK (DARE) |
| Elena Beratarbide | Digital Health and Care Directorate |
| Tim Hubbard | Genomics England |
| Andrew Morris Cassie Smith David Seymour Edel McNamara Paola Quattroni Rachel Brophy Yemi Macaulay |
HDR UK |
| Frances Burns | Health and Social Care Northern Ireland |
| Alison Knight | Health Research Authority (HRA) |
| Alex Bailey | Medical Research Council (MRC) |
| Vicky Chicco | National Data Guardian Office (NDG) |
| Ian Diamond | National Statistician – ONS |
| Michael Chapman Kevin Willis |
NHS E |
| Bill South | Office for National Statistics (ONS) |
| Amir Mehrkar | OpenSafely |
| Sara-Jane McAteer Munisa Hashimi |
Public Advisory Board, HDR UK |
| Carole Morris | Public Health Scotland |
| Angela Coulter | Public Member |
| Roger Halliday | Research Data Scotland |
| David Ford | Secure Anonymised Information Linkage Databank (SAIL) |
| Andy Boyd | UK Longitudinal Linkage Collaboration (UK LLC) |
| Alex Newberry | Welsh Government |
Meeting 04/11/2022 Download here
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.
