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.

The Challenge

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 and facilitating 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 and which take account of 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 bring alignment between processes for accessing administrative data, health and care service data and study data, building on 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 three 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.

Membership

Meeting minutes

Meeting 21/4/2022 Download here

Meeting 4/7/2022   Download here

 

For more information please email ukalliance@hdruk.ac.uk