People across Wessex are helping to shape how the Secure Data Environment works. Their views guide the safeguards we put in place, the values we follow, and the research we support. This page explains what people have told us, how we are acting on it, and the changes already made.
“Public trust is vital. The NHS is committed to putting people at the heart of how health data is used. In Wessex, we go further: our SDE is shaped by local people and NHS staff working together: setting our values, our research priorities, and ensuring real benefits for all. Public involvement is woven into every decision we make.”
Prof. Christopher Kipps, Wessex SDE Lead and Professor of Clinical Neurology & Dementia at University Hospital Southampton NHS Foundation Trust
Learn More About the Wessex SDEAs well as following the law, we have an agreement created with people across Wessex about how we use NHS patient data responsibly. This is our social licence. It sets clear limits of what is acceptable – and standards the public expect us to uphold.
Our social licence ensures NHS patient data is always used for clear public good. Our Digital Critical Friends – a standing group of public participants – are equal partners in decision making. Their input helps turn these shared values into daily action, guiding everything from data access to service delivery.
Our social licence has three parts:
These are the principles that guide how the Wessex SDE operates day to day. They shape how we make decisions, how we communicate, and how we ensure research delivers clear public benefit.
These themes reflect what local people consider most important and guide Wessex SDE’s research priorities to align with community needs. Researchers can focus on these areas to ensure strong public support.
We work with public contributors to create clear recommendations for change, turn them into practical steps for the SDE, and report on what has been improved or is still in progress.
Working out what builds public trust is a challenge. Using NHS data for research is complex, and the details matter – but they are not always obvious to the public. We needed to understand what people felt was right and fair, and to agree simple guardrails that everyone could recognise and relate to.
We started by engaging with seldom-heard groups – communities and individuals who are often under-represented in health research. This helped us understand their red lines and shape the next stage of engagement.
We then ran a deliberative dialogue – a structured series of workshops where a diverse group of Wessex residents learned about the SDE, discussed the issues in depth, and reached shared conclusions. From this process came the core values and Strategic Research Priorities that now guide everything we do.
These outcomes were then tested and refined through the Improving Tomorrow’s Health regional campaign, which reached over half a million people, and through follow-up polling to check wider support.
Finally, we began translating these values and priorities into Actions to Build Trust – practical policy and governance changes that show we are listening and acting. Our Digital Critical Friends now continue this work, reviewing new policies and decisions as equal partners to make sure the Wessex SDE keeps earning public confidence.
run across Dorset and Hampshire, involving 31 different voluntary and community organisations.
got involved in the conversations about using their NHS health and care data for research.
informing the design of the Wessex SDE and its governance.
selected by lottery from across Wessex to answer the question "How should we make the most of NHS data for research to improve lives and health outcomes in Wessex?"
in Bournemouth and Southampton, as members of the public and professionals worked together to set the rules for how our SDE should work.
set by the Public Panel to guide how the SDE is run - and 32 specific policy recommendations to put into practice.
in newspapers, websites and radio stations across the region - from three press stories.
the estimated reach of our campaign, including print, online and radio media across Wessex.
supported the campaign - taking the conversation about the Wessex SDE out to their communities with the help of our communications toolkit.
recruited from a wide range of backgrounds and given training and support.
of the SDE is the core role of our Digital Critical Friends - they are involved in designing and running the SDE alongside professionals.
completed with 36 recommendations being implemented by SDE and adopted into its governance framework.
A social licence is not a one-off agreement. Public attitudes change, research evolves, and new questions will always emerge. That is why our social licence is a living commitment – something we must keep earning through openness and ongoing partnership.
Our Digital Critical Friends help us do this by testing ideas, shaping policies, and keeping our decisions grounded in what feels fair to local people. We also speak regularly with community groups, charities, and regional partners across Wessex to gather fresh insight and understand different perspectives.
These conversations help us stay accountable and ensure the Wessex SDE continues to reflect the values of the people it serves. If you would like to take part, invite us to meet your group or share your views, we would be happy to talk.
Hear from some of the people who helped shape the Wessex SDE – why they got involved, what they have learned and how their contributions are influencing change.
We are committed publicly report the activities and findings of our patient and public involvement and engagement (PPIE) programme. At the heart of this reporting what you said – and what the SDE did in response.
This includes publishing a full list of our ‘Actions to Build Trust’ that shows all recommendations made to the SDE by public participants and how we are responding.
We also publish quarterly summaries of what we are doing and reports of our bigger and more formal projects.
Finally we publish research and insight briefings – thematic reports that give clear, accessible insights into key issues affecting the Wessex SDE and the wider NHS Research SDE Network.
We aim to write all reports in accessible language and to keep them updated regularly to show how public voices are shaping what we do and how we do it.