Understanding the Secure Data Environment (SDE): Insights from HETT Show

At HETT Show, the "Keynote Panel: Understanding the Secure Data Environment (SDE)" session explored the critical role of secure data environments in healthcare. The SDE framework is designed to support the secure access and use of health data for research, innovation, and clinical improvement. This discussion highlighted both the successes and challenges of implementing these environments, emphasising the importance of data security, patient involvement, and cross-regional collaboration.  

The panel for this session featured: 

• Eleonora Harwich, Director - Digital Health and Research, Newmarket Strategy
• Liz Sapey, Co-chair, Information Governance and Ethics Workstream, West Midlands Secure Data Environment
• Rebecca Cosgriff, Deputy Director, Data for R&D, NHS England
• Kerrie Woods, Director, Thames Valley and Surrey NHS Secure Data Environment 
• Mary Mancini, Patient Representative & Digital Critical Friend

The Purpose of the Secure Data Environment 

The NHS Research Secure Data Environment (SDE) Newtork was established as part of the "Data Saves Lives" initiative, aiming to create safe spaces for researchers and healthcare providers to access and use health data securely. A major shift has occurred in how the NHS handles data; rather than transferring data externally, it will in future allow for data to be accessed and analysed within controlled, secure environments. This shift was a significant change in the NHS's data practices, ensuring that sensitive health data remains protected while still being used for clinical research and healthcare advancements. 

This Network operates on both national and local levels, with the national NHS England SDE complemented by regional SDEs across the UK. These environments vary in their level of maturity, with some regions having more established infrastructures while others are still in the early stages of development. The panel emphasised that despite these differences, the SDEs aim to provide systematised, secure environments for data access across the country, improving the collaboration between researchers and healthcare institutions. 

Key Achievements of the SDE Programme 

Since its inception in 2022, the Data for R&D Programme has made significant strides. The panel highlighted one of the most notable achievements: the establishment of the NHS Research SDE Network, which supports over 500 research studies across England. This Network is a vital tool in helping researchers access curated and high-quality data, in a privacy-preserving way while maintaining the highest standards of security. 

The panel also discussed how the Programme has broken down many barriers that previously hindered cross-regional collaboration in research. By establishing standard processes and governance structures, the SDE Network should allow for federated data access across different regions, making it easier for researchers to securley conduct large-scale studies involving multiple healthcare systems. This cross-border collaboration will be one of the most significant achievements of the SDE Network, as it enables researchers to work with larger, more diverse datasets, ultimately improving the quality and relevance of their findings  

One example of local success came from the Thames Valley and Surrey region, where researchers have launched 35 live projects using the secure analysis environment. These projects utilise 25 Azure workspaces, enabling 66 active users to conduct real-time research. Moreover, the region recently developed a proof-of-concept cancer data mart, which consolidates disparate datasets into one accessible platform, allowing for quicker access to critical data. This innovation drastically reduces the time it takes to compile data for research from days to hours. 

The Role of Patient Involvement 

Patient engagement and public trust are crucial elements in the success of the NHS Research SDE Network. Mary Mancini, a patient representative, shared their experience as part of the Patient and Public Involvement (PPI) group. The group actively participates in the governance and leadership meetings of the NHS England SDE, ensuring that the voices of patients are heard when decisions about data use are made. 

The Data for R&D Programme has placed a strong emphasis on maintaining transparency with the public regarding how health data is used. This transparency is key to maintaining public trust, especially when concerns about data privacy are at an all-time high. The panellists acknowledged that ensuring patients feel comfortable with data about them being used for research is a continual challenge, but one that is essential for the success of the SDE Network. 

Challenges and Areas for Improvement 

Despite the progress made, the panel acknowledged several ongoing challenges in implementing secure data environments across the UK. One of the main issues is the varying levels of digital maturity across healthcare organisations. Some regions have well-established electronic health records systems, while others are still heavily reliant on paper-based records. This inconsistency makes it difficult to standardise data and ensure that all healthcare organisations can contribute effectively to the SDE. 

The quality and completeness of health data are also significant concerns. Some healthcare organisations have higher-quality, near-to-research-ready datasets, while others require substantial cleaning and standardisation before they can be used. The panel emphasised the need for flexible data curation strategies that can accommodate the differing needs of researchers. While some researchers prefer raw, unprocessed data, others require clean, standardised datasets for their work. 

Another challenge is the balancing act between ensuring consistency across the SDE Network and allowing for the flexibility needed to accommodate different research projects. Researchers want a seamless, consistent process for accessing data, but they also require agility to adapt the data to their specific needs. Finding the right balance between these competing demands is an ongoing challenge for the Data for R&D Programme

The Future of the NHS Research SDE Network

Looking ahead, the panel discussed the need for long-term funding to ensure the sustainability and success of the Data for R&D Programme, which funds the NHS Research SDE Network. While the Programme has made significant progress, many initiatives are still in their early stages, and continued investment is needed to maintain momentum. The panellists expressed hope that the Government would provide multi-year funding to support the development of secure data environments.

Additionally, the panel highlighted the importance of continuous patient and public involvement. Engaging with patients and ensuring their concerns are addressed will remain a key priority as the SDE Network evolves. The success of SDEs relies not only on the technological infrastructure but also on the trust and support of the public. 

The session at HETT Show provided valuable insights into the progress and challenges of implementing secure data environments in the NHS. The SDE Network has already made significant strides in enabling secure, cross-regional access to health data for research, but there is still much work to be done. With continued investment, patient engagement, and cross-regional collaboration, the SDEs have the potential to transform healthcare research and improve patient outcomes across the UK. 

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