The Pan-UK Data Governance Steering Group is a working Group of the UK Health Data Research Alliance representing data custodians and policymakers across the four nations
The Pan-UK Data Governance Steering Group represents data custodians, policymakers and public contributors across the four UK nations and is a sub-group of the UK Health Data Research Alliance. The Steering Group meets quarterly and focuses on streamlining and simplifying data access, ethics, and governance processes in a trustworthy way.
Accessing data for health research currently presents several challenges. Application processes can be time consuming and complex for researchers, pathways to data access can vary across data custodians and lack transparency, and data use and research outcomes can be unclear to the public. Addressing these challenges with robust, streamlined, transparent and simplified data access processes would allow faster, better research, speeding up advances in health and social care. The Pan-UK Data Governance Steering Group is seeking to drive these changes, working collaboratively and building on existing best practice in partnership with the public and patients. This approach ensures that research is in the public interest and reassures people that data is being used responsibly and for their benefit.
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 to enable us to build governance models on a foundation of deserved public trust.
The Steering Group includes public representatives and partners closely with the HDR UK Public Involvement and Engagement (PIE) team to facilitate broad and meaningful public involvement in all aspects of the Steering Group’s work.
A strategic partnership has been formed with the Public Engagement in Data Research Initiative (PEDRI) to develop and disseminate PIE best practice among data custodians. The partnership is focused 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.
Interested in engaging with this Alliance working group?
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Innovative Data Governance Frontiers meeting
Meeting Summary: Download here
Below you can view the welcome address delivered by Sir Patrick Vallance, UK Government Chief Scientific Adviser.
