When I joined Health Data Research UK (HDR UK) in January 2025, I knew I was stepping into a field at a pivotal moment. Health data is often described as the lifeblood of modern healthcare, yet unlocking its full potential remains an ongoing challenge. Attending my first UK Health Data Research Alliance Council meeting on 5 February 2025 was an opportunity to see first-hand how leading voices from across sectors are working to address these challenges.

A key part of the meeting was a panel discussion on the future of UK health data, focusing on how different policy and infrastructure proposals could support the implementation of the Sudlow Review recommendations. The panellists were drawn from the Alliance Executive Committee and represented a broad range of sectors –including government, academia, life sciences, and patient advocacy. Despite their varied perspectives, they all agreed on one fundamental point: health data is a powerful asset, but only if the right foundations are in place.

Trust: The make-or-break factor

A key theme that emerged throughout the discussion was the importance of public trust. While many people support the use of health data for research, concerns persist about how data is handled and shared. Transparency, patient engagement, and clear communication were highlighted as essential.

The panel stressed the need to move beyond abstract policy discussions and demonstrate real-world benefits to patients and the public. Whether through faster diagnosis, improved treatments, or safer healthcare, people need to see tangible advantages from health data initiatives.

The conversation reinforced an important lesson: trust is not automatic; it must be continuously earned. Recent controversies have shown how quickly trust can be lost when governance is unclear or communication is poor.

The UK’s strengths and its unfinished work

One of the strongest impressions I took from the panel was the untapped potential of UK health data. The country has an enviable repository of health records, spanning primary and secondary care, research databases, and public health registries. However, as the panellists emphasised, having data is not enough – it needs to be accessible, trusted, and used effectively.

The pharmaceutical industry, for example, sees the UK as a world-class centre for health data research, but if data access remains slow and inconsistent, investment could go elsewhere. There was strong support for a dedicated national health data research service to ensure speed, quality, and robust governance, aligning with international standards.

Another key theme was the lack of a unified UK strategy. While the nations of the UK have made progress in strengthening  health data infrastructure, fragmentation remains a major issue. Without a coordinated, long-term approach, the UK risks falling behind countries that are making bolder moves to consolidate their data ecosystems.

If the UK does not act decisively, it risks losing its competitive edge in global health data research. The challenge is not a lack of expertise or ambition, but rather the need for alignment, investment, and decisive leadership.

Lessons from across the UK

The discussion highlighted how different parts of the UK are addressing health data challenges in their own ways. Research Data Scotland has streamlined access to national datasets, demonstrating the benefits of a centralised but well-governed approach. Wales’ SAIL Databank is making impressive progress by linking health and non-health datasets, though concerns remain about long-term sustainability. Northern Ireland, meanwhile, is in the process of implementing an integrated electronic health record system. This could be transformative but also brings complex regulatory hurdles due to the need to comply with both UK and EU legal frameworks.

These examples show that while progress is happening, the UK still lacks a joined-up national approach that can ensure alignment, prevent duplication, and maximise impact. The question is how to bring these efforts together into a more cohesive and sustainable strategy.

The role of the UK Health Data Research Alliance

The discussion reinforced the essential role of the UK Health Data Research Alliance in bringing together stakeholders to tackle these challenges. As a collaborative network, the Alliance has the potential to drive alignment, knowledge-sharing, and best practice adoption across the UK.

A recurring theme was the importance of clarifying roles and responsibilities within the health data research landscape. While various organisations and initiatives are making progress in their respective areas, the lack of coordination risks duplicating efforts and missing opportunities for more efficient investment in data as infrastructure. The Alliance is well positioned to help ensure that national efforts are aligned, resources are used effectively, and lessons from different regions are shared.

Where do we go from here?

The panel discussion was not just about identifying challenges; it was also about solutions. In line with the Sudlow Review recommendations, there was broad agreement that a UK-wide strategy is needed to provide a coordinated, long-term approach to health data infrastructure. Investment in core datasets – including primary care, secondary care, and mortality data – should be prioritised before expanding into more ambitious projects.

Public engagement must also be placed at the heart of every initiative. Without clear, transparent communication, concerns around trust and governance will continue to slow progress. At the same time, the UK must ensure that its health data system remains internationally competitive, both to attract research investment and to retain its position as a leader in data-driven healthcare innovation.

This sense of urgency was reinforced by discussions on data access and governance, where multiple panellists stressed the need for faster, more efficient processes that still uphold the highest standards of security and privacy. If the UK is to lead on the global stage, it must ensure that researchers, policymakers, and industry partners can access and use data in a way that is both responsible and impactful.

Final reflections

Attending my first UK Health Data Research Alliance Council meeting reinforced just how important this moment is for the future of UK health data. The conversation is shifting from what needs to change to how we make it happen.

This is not just about systems and policies; it’s about real people. It is about the researchers working on new treatments, the clinicians making data-driven decisions, and the patients getting the best possible care. The expertise, ambition, and commitment to making UK health data work better for everyone are all there – but now is the time to turn ideas into action.

I left the meeting with a sense of urgency, but also optimism. The message from the panel was clear: we cannot afford to wait. The time for action is now.