OPINION: Collaborating for the future of health data

By aiming to deliver safe, sustainable, and trusted health data services, the Data for Research and Development Programme aligns perfectly with the Government’s key missions to harness AI for diagnostics, improve data access, and enhance clinical trials efficiency. By shifting to a new data access model that is both broad in scale and deep in granularity, this comprehensive approach is poised to transform healthcare research and development, ultimately leading to better patient outcomes and more efficient health services.

 

Personal insights

I’ve worked in the NHS for over two decades, including as a practising nurse. In all the roles I have had in the NHS, I have experienced first-hand the importance and necessity of safe and responsible use of data to inform high quality care for patients, support intelligent systems design and identify opportunities for research and innovation. In my roles as Managing Director of Research Development & Innovation at University Hospitals Birmingham NHS Foundation Trust and Programme Director for the West Midlands Secure Data Environment (SDE) I have seen how harnessing data at a larger scale can facilitate remarkable breakthroughs in research.

Now, as the newly appointed Senior Responsible Officer (SRO) for the NHS England Data for Research and Development Programme, I can see the opportunity we have to transform how data are used to drive innovation and improve patient care. In doing so, I believe we can play a leading role in supporting the government’s vision and cement the UK’s place as world leaders in the health data industry.

 

The power of data

We are already making huge advances in enabling safe and secure access to data whilst maintaining patient privacy and ensuring that public benefit is front and centre of the work we do.

At the heart of our strategy are Secure Data Environments (SDEs) – safe analytical spaces where data generated by the NHS can be securely accessed by approved researchers. This approach marks a significant shift from old-fashioned data sharing to controlled data access within an NHS managed environment, enhancing security while speeding up access to crucial health datasets.

The impact of this approach is already clear. Over 500 research studies have been supported, providing safe access to hundreds of billions of rows of data. By March 2025, our SDE Network will be fully operational as a ‘Minimum Viable Product’ (MVP), featuring unique linked datasets for research using genomic, pathology and imaging data, with access managed through a single Health Data Gateway.

 

Shaping the future

Looking ahead, I’m particularly excited about the outcomes of our ongoing public deliberations. We’ve already engaged with members of the public nationwide, discussing crucial topics like data access principles, national data opt-out reforms, and AI use in healthcare. By March 2025, we aim to have involved more than 5,000 people in shaping our work.

I’m eagerly anticipating the insights these discussions will yield. They’re not just vital for aligning our data policies with public expectations – they’re fundamental in ensuring the public plays a key role in determining how their health information is used. In tandem with our national public deliberations our SDE network is engaging widely with local populations across regions in England. The insights from these engagements are adding regional perspectives to our work. This engagement will be instrumental in building and maintaining the trust that’s central to our success.

If we are to succeed in delivering high quality and innovative care though data-enabled research we need not just the contribution and support of our patients and the public, but also the contribution and support of the research and life sciences sectors. To this end, our programme has been working to understand how best we can enable close collaboration with academic and industry partners. Through roundtable discussions, commissioned reports, and direct engagement with industry stakeholders, we’re gathering valuable insights on what researchers need from our services. By actively seeking input from industry collaborators, we’re not only identifying their requirements but also incorporating their recommendations to shape and refine our service offerings.

We are progressing towards our goal of achieving an MVP for SDEs by spring 2025, and by March 2025, we will have completed seven ‘driver projects’ accessing data from multiple SDEs, testing our ability to provide a seamless user experience for approved researchers across the network.

 

Opportunities and challenges

Looking ahead, the Data for Research and Development Programme holds immense promise. Over the coming years, it will facilitate groundbreaking research with the potential to transform healthcare, helping us tackle major health challenges while supporting the government’s agenda to leverage data and technology for improved efficiency, accessibility, and quality of care in the NHS.

As we transition from data sharing to data access, challenges will undoubtedly arise. However, our focus remains steadfast: staying on track while carefully balancing the needs of health data users with our responsibility to safeguard the public’s information.

Through collaborative efforts, innovative approaches, and an unwavering commitment to public trust, we can unlock new frontiers in medical research and patient care. This journey will not only advance healthcare in the UK but also cement our position as a global leader in health data science.