Patient voice

Insights from patients and the public are central to the work of the NHS Research Secure Data Environment (SDE) Network. Their views help inform and shape policies and decisions to ensure the SDE Network maintains the highest standards of data security and public trust.

In this short video health data users talk about the importance of public trust when health data is used for research.

The Department of Health and Social Care and NHS England run a programme of England-wide public engagement on data to meaningfully involve the public in decisions about how their health data is used. This includes a range of activities which bring people together for discussions on topics that are high priority or particularly complex, such as the principles for data use and access, or questions about data opt-out policy. 

The regional SDEs also regularly engage with local people on aspects of health data that are important to their communities and geographies. The views and insights shared with the SDEs help shape their approach to data access and inform research partners about what matters to the public when it comes to health data.

The public and patient voice has shaped the form, function and plans of the SDE Network and will continue to do so. Ongoing engagement with the public ensures the SDE Network remains accountable to the people whose data enables life-saving research and continues to build the trust essential for the network's success.

In this short video members of the public share their experiences of working with us to make health data securely available for approved research.