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Author: ralph

From neurodegeneration research question to decision-grade feasibility in eight weeks 

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Digital map of England illuminated with blue and orange data networks and connected points.

Wessex Secure Data Environment (SDE) helped global life science company GSK, working in partnership with Health Data Research UK (HDR UK), understand how England’s SDE Network could support complex, real-world research studies in neurodegeneration by providing rapid, candid and evidence-based feasibility insight. 

Building the route to national-scale research 

GSK and HDR UK needed to understand the data landscape and assess whether England’s SDE Network was fit for purpose to support large, complex, real-world evidence studies of progressive neurodegenerative diseases such as dementia. 

Working through Connect-D, Wessex SDE coordinated an initial national feasibility assessment across ten Secure Data Environments. In eight weeks, the team assessed population coverage, linked data availability, governance readiness, operational capability, and likely delivery timelines. 

The assessment showed that the SDE Network has the foundations and operating model needed to support population-scale, real-world evidence studies into complex neurodegenerative diseases, such as dementia and Alzheimer’s disease, that have a significant public health impact as the leading causes of death in England and Wales.  

It mapped the practical steps, timelines and data onboarding needed to conduct a feasibility assessment of whether the data are fit for purpose. By identifying the remaining barriers and quantifying the cohort gap, Wessex SDE created an evidence-based roadmap for national-scale delivery.

Carol Koro, VP and Head, Global Epidemiology and Real-World Evidence, GSK, said:

“For large-scale studies with significant public health impact, rapidly understanding what can be delivered, by when, and under which governance requirements is critical for planning. The assessment led by Wessex SDE, with HDR UK and SDE partners, provided a timely, structured view of data availability, linkage, secure access, and delivery readiness across England’s SDE Network. This clarity is essential for making informed decisions about future research.” 

Rhoswyn Walker, Chief of Staff and Director of Strategy, HDR UK, said:

“Working in partnership, HDR UK, GSK and Wessex SDE delivered the coordinated national response this kind of complex research question requires. By bringing together multiple SDEs and producing a coordinated national assessment of readiness, the team helped us understand current capability, future dependencies and what is needed to support population-scale research through the SDE Network.”

Heather Case, Deputy Director Data & Intelligence, NHS BSW, Dorset and Somerset ICB, said:

“Dementia affects every community, so every part of the NHS has a stake in helping research move faster where it can be done safely. This work shows how local NHS data can support national research responsibly, creating opportunities for research that benefits patients, creating routes into funded research and keeping local stewardship, governance and public benefit at the centre.”

John Stainton OBE, Wessex SDE public member , said:

“Every family touched by dementia wants better answers and especially the hope for the future those better answers provide. This work is encouraging because it shows the NHS testing whether complex research can be done safely, transparently and in the public interest before conclusions are drawn.”

Further information

  • Dementia and Alzheimer’s disease are the leading cause of death in England and Wales. The World Health Organisation (WHO) now reports that more than 57 million people worldwide live with dementia. 
  • The wider collaboration between GSK, Health Data Research UK (HDR UK) and the UK Dementia Research Institute (UK DRI) was announced publicly in March 2025. The collaboration aims to advance understanding of neurodegeneration with a first-of-its-kind dementia study.  
  • Wessex SDE coordinated the assessment through Connect-D, an NHS England supported programme building a national-scale dementia data registry and improving access to Secure Data Environments. 
  • The project required access to a large cohort drawn from a UK population using linked primary care, secondary care, medication and mortality records. 
  • The assessment engaged ten Secure Data Environments across England, with five providing detailed readiness assessments covering population coverage, data availability, linkage capability, governance, operational readiness and delivery timescales. 
  • The assessment was completed in approximately eight weeks, providing GSK, HDR UK and participating Secure Data Environments with a single national view of current capability, readiness and future delivery requirements. 
  • The assessment concluded that the SDE Network has an emerging operating model capable of supporting national, multi-SDE, real-world evidence research, while identifying the remaining data onboarding and participation required to achieve the target cohort size. 
  • The work produced an evidence-based roadmap for future delivery and established a repeatable approach for assessing national research feasibility across multiple Secure Data Environments. 
  • Any future study would use pseudonymised NHS electronic health records accessed by approved researchers within trusted and secure research environments, subject to the relevant research, information governance, data controller and data access approvals. 

 

 

Wessex SDE publishes new strategy to strengthen public involvement in NHS data research

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Illustration of people working together around a large lightbulb, symbolising collaboration between patients, public contributors, researchers and the NHS to shape health research and the responsible use of NHS data.

The Wessex Secure Data Environment (SDE) has published its Communications and Community Involvement & Engagement (CIE) Strategy and Digital Critical Friends Work Programme for 2026/27. Together, they set out how communications, patient and public involvement, and community engagement will support delivery of the SDE’s mission to enable impactful research that improves NHS health and care services and returns value to the NHS, while helping maintain the public trust on which that work depends.

The strategy places patients, public contributors and communities at the heart of the SDE’s work over the coming year. Alongside improving transparency and patient information, it sets out a programme of activity to strengthen public involvement in emerging areas such as AI-enabled research, multi-SDE research, public benefit reporting and the development of new research partnerships. The accompanying Digital Critical Friends Work Programme describes how members will contribute through their involvement in the SDE’s governance as well as through co-design activity, ensuring that public perspectives continue to shape how the SDE develops – and sustains its social licence.

Both documents have been developed with the Wessex SDE’s Digital Critical Friends and reflect several years of public dialogue and involvement. They also support the SDE’s wider objectives to build a leading regional research data and AI capability, provide an excellent service for researchers and operate as a trusted, well-governed and financially sustainable Secure Data Environment. As the SDE continues to evolve, communications and community involvement will play a central role in ensuring that research remains transparent, publicly accountable and focused on delivering benefits for patients, communities and the NHS.

Southampton and Portsmouth join forces to tackle sepsis – one of the NHS’s biggest challenges

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The GAP-S study Hack Day team gathered for a group photograph during a collaborative workshop. Eleven team members are pictured together in an open-plan office decorated with colourful bunting.

Sepsis is a serious, life-threatening condition where every hour counts. Hospitals across the NHS already use the National Early Warning Score (NEWS2) to identify patients who are becoming seriously unwell. However, while NEWS2 tells clinicians that a patient is deteriorating, it cannot tell them whether sepsis is the cause.

Researchers, clinicians and data specialists from University Hospital Southampton NHS Foundation Trust and Portsmouth Hospitals University NHS Trust recently came together for a collaborative Hack Day to launch GAP-S, an ambitious new research project, jointly funded by the NIHR Southampton Biomedical Research Centre and the Wessex Secure Data Environment.

GAP-S aims to develop a simple sepsis risk score using routine blood test results that are already taken when a patient’s NEWS2 score indicates deterioration. Rather than introducing new tests, the researchers hope to give clinicians an additional tool to identify patients who are most likely to have sepsis and need urgent treatment.

Using the Wessex SDE, the team will securely analyse routine hospital data from Southampton and Portsmouth to develop the new tool and then test it in two different NHS organisations. This multicentre approach will help ensure any future tool is robust enough for wider NHS use.

The Hack Day brought together clinicians, researchers and data scientists from both NHS Trusts to develop the project, share expertise and strengthen the partnership behind the study. It marks the beginning of a collaboration that has the potential to improve how sepsis is recognised while demonstrating how Secure Data Environments can support ambitious NHS research across organisational boundaries.

See the GAP-S study on the Wessex SDE Data Use Register here.

New Impact Report: How public voices shape the Wessex SDE

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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.

 

Wessex Public Panel on NHS Data sets out public expectations for NHS data use

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Professor Christopher Kipps, the Wessex Secure Data Environment lead, stands beside a flipchart speaking to a room of participants seated at round tables during the final day of the Wessex Public Panel on NHS Data. The group listens attentively, with posters and discussion materials displayed around the bright, modern meeting room.

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).