The Wessex Secure Data Environment (SDE) continues to place public trust and transparency at the heart of its development, with the latest impact report showing how patient and public insight is directly shaping the way health data is used for research.

Between June and September 2025, members of the Digital Critical Friends (DCF) group — 15 trained public participants — played a key role in reviewing the SDE’s governance policies and helping design new ways for the public to stay involved as the platform moves from development to delivery.

The DCF group completed a detailed review of eight high-priority policies, focusing on areas most critical to public trust, such as transparency, privacy, and equality. Their recommendations were presented to the Wessex SDE Board in July and are now being implemented.

To support the next phase, the SDE and DCFs have also co-designed a new working group structure to embed public participation directly into ongoing operations. This will ensure that public voices continue to inform governance decisions and the design of future services.

These developments sit alongside the establishment of an independent Wessex Data Access Committee, which includes four public members and ensures that all data access requests are fair, transparent, and in the public interest.

Together, these milestones reflect the SDE’s commitment to co-design, openness, and accountability, responding to evolving national policy, researcher needs, and the expectations of Wessex residents.

Read the full PPIE Impact Report: June–September 2025.

A diverse group of residents from across Wessex has helped shape how NHS patient data should be used for research. Their recommendations, published today, set out what people in Wessex need to trust the Wessex Secure Data Environment (SDE). You can download the full report here (30.5 MB).

A recognised best-practice approach

The Wessex Public Public Panel on NHS Data was a deliberative dialogue – a recognised best-practice method for involving the public in complex decision-making. It goes beyond simply asking for opinions.

Designed as a co-design process, it brought together subject-matter experts and members of the public whose lived experience as patients, NHS users, and data contributors gave them a direct stake in how the Secure Data Environment should be shaped.

Participants were selected to reflect the Wessex community, supported with clear information, and given space to learn, discuss, and challenge. Recruitment was carried out independently by the Sortition Foundation, using a civic lottery to ensure the panel reflected the diversity of Wessex communities.

This approach is widely used in areas like health, climate change, and digital policy because it enables diverse voices to work together on equal terms. The outcome is informed and collective recommendations that genuinely shape how decisions are made.

Grounded in what our communities told us

The Panel was grounded in earlier engagement with more than 600 people from 26 seldom-heard groups across Wessex. These conversations brought forward the perspectives of communities who are often under-represented in NHS decision-making, including people who have faced barriers to participation or had negative experiences of public services.

This earlier phase generated a set of values-led principles around issues such as data security, transparency, accountability, and inclusion. These insights acted as the starting framework for the Public Panel, providing clear ethical boundaries and community expectations. By working within those parameters, the Panel was able to focus its time on shaping practical solutions and governance proposals that would build trust and deliver public benefit for all.

Defining the conditions for trust

The Panel’s work produced three linked sets of recommendations — together setting out what can be seen as the social licence for the Wessex SDE:

1. Core Values – Eight values defining what matters most to local people, such as privacy, fairness, openness and ensuring benefits are shared by all communities. These values set the boundaries for trust.
2. Strategic Research Priorities – Eight areas where people in Wessex want the SDE to focus, from prevention and tackling health inequalities to ensuring value for money and delivering quick wins alongside long-term impact. These priorities describe what kinds of research the public believes will make the biggest difference.
3. Actions to Build Trust – 32 practical recommendations for how the SDE should operate in practice. These include transparency measures, independent oversight through a new Data Access Committee with public members, and rules to make sure industry partnerships deliver clear public benefit.

Taken together, these outputs provide a public blueprint for a Secure Data Environment that can accelerate research while earning and sustaining trust.

Designed and delivered in Wessex

The process was designed by Opyn Consulting on behalf of University Hospital Southampton NHS Foundation Trust (UHS). It was delivered by facilitators from UHS, the University of Southampton, and members of the SDE’s Digital Critical Friends public advisory group. Researchers from across Wessex supported the discussions, bringing real-world examples from fields such as genetics, intensive care, and digital health to make the issues tangible and relevant.

Sam Fortune, Public Panel member and Wessex SDE Digital Critical Friend, said:

“This was a truly collaborative exercise that put the public in the driving seat, working alongside SDE project leaders and researchers to shape the policies and rules that will guide the SDE. As someone who has been part of the Public Panel and am now actively involved in its governance, I can see that our voices haven’t been diluted. The recommendations we made are carried through in this report, and they are already shaping how the SDE is designed and delivered.”

Read the full report (30.5 MB). If you would like a shorter version of the report with a smaller file size, without appendices, download the core report (1MB).