We are working to harmonise and simplify data access for research and to earn public trust in the use of their data. A lack of standardisation and transparency in data access processes creates an overly complex and difficult data landscape for the public and researchers to navigate. Researchers frequently state that complex data access and information governance processes cause delays in data access.

Tackling this problem would allow faster, better research – speeding up advances in healthcare.  At the same time public involvement needs to be meaningful and integral to health data research at all levels and stages. This helps ensure that research is in the public interest and reassures people that data is being used responsibly and securely, and for wider public 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.

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.

Interested in engaging with this Alliance working group? 

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