Last November, the Sudlow Review was published (“Review”). This is an independent review of the UK's health data, led by Professor Cathie Sudlow OBE and commissioned by the Chief Medical Officer for England, NHS England's National Director for Transformation, and the UK National Statistician. 

The Review makes five recommendations on the use of health data within the UK, which aim to remove unnecessary barriers to access to health data, whilst protecting patient privacy.

Key Findings

Despite the abundance of health data within the UK, including NHS records, GP records and test data, as well as related health and social care data, the Review finds that these resources are currently underutilised. Healthcare professionals, researchers and policymakers face many obstacles and delays in accessing, linking and analysing health data to improve people’s care and lives. These barriers arise from the UK’s complex and inefficient systems for managing and accessing health data. The fragmented approach to using and sharing health data across different institutions and regions further exacerbate this issue.  

The Review highlights that during the COVID-19 pandemic, national schemes successfully provided secure linkage and analysis of health data. This enabled policy makers and practitioners to make informed policy decisions and share successful treatments for the public benefit. However, the Review notes that this level of health data access and sharing is not the norm; currently the access, sharing and linkage of data is "difficult, slow or impossible". 

The Review emphasises that if health data can be properly utilised it could, amongst other things, result in improved diagnosis, enhance the efficiency and the effectiveness of health care systems and help target effective prevention strategies and public health initiatives. 

Recommendations

To achieve these aims the Review sets out 5 key recommendations:

1. Coordinated joint strategy to make England's health data a critical national infrastructure

This recommendation calls for major national public bodies to agree on a coordinated strategy that recognises health data as critical national infrastructure (CNI). CNI are those national assets that are deemed essential for the functioning of society. The designation of health data as CNI would be to recognise that health data is essential for public health but that any disruption to this infrastructure would have significant economic and social impact.  

A coordinated strategy between national public bodies should aim to reduce the complexity and fragmentation of health data and promote long term planning and investment. By aligning around common goals, national public bodies can promote the efficient use of health data for the benefit of patients and the public as a whole. 

2. Establish a national health data service for England with accountable senior leadership

This recommendation establishes that NHS England, National Institute for Health and Care Research, the Departments of Health and Social Care, Science, Innovation and Technology and UK Research and Innovation should together establish a national health data service. A single national health data access system would streamline and standardise data governance and access, making it easier for researchers and analysts to access and utilise health data. 

3. Strategy overseen by the Department for Health and Social Care for ongoing coordinated engagement with patients, public, health professionals, policymakers and politicians 

This recommendation indicates that ongoing coordinated engagement with the wider public and professionals is crucial for building trust and ensuring the success of health data initiatives. This would promote the access to individuals’ own health data and an understanding of the perspective of different health professionals, including GPs.

4. UK-wide approach for data access processes and proportionate data governance 

This recommendation aims to enable cross-nation and cross-sectoral data sharing and linkage, allowing for more comprehensive and impactful research and analysis. The aim of this recommendation is that trusted professionals are able to quickly access de-identified data needed for to carry out this research and analysis whilst maintaining the security of this data. 

5. Develop a UK-wide system for standards and accreditation of SDEs holding data from the health and care system. 

The final recommendation focuses on developing UK-wide standards and accreditation of secure data environments ensuring and accelerating the safe use of health data. The Review recommends that the UK Statistics Authority, along with health and social care departments, should lead on this development and this would result in the safe use of health data for research, ultimately benefitting patients and the public. 

Takeaways

It is particularly notable that the Sudlow Review seeks to designate health data as CNI, which would place such data on par with essential public services, as well as ensuring that health data would receive heightened protection against cyber threats and unauthorised access. This follows recent movements from the UK Government to designate digital assets and ‘data’ as CNI; we recently reported on the classification of UK data centres as CNI in this article.

Professor Sudlow said of the Review: "We are simply not maximising the benefits to society from the rich abundance of health data in the UK…This review shows that getting this right holds a great prize, for our own care and for an effective healthcare system for everyone. We need to recognise our national health data for what they are: critical national infrastructure that can underpin the health of the nation."

Following the Review, we will follow how these recommendations might be carried forward and if any changes are made to how health data is recognised and managed nationally. 

If you have any questions or would otherwise like to discuss how the recommendations may impact you or any other issue raised in this article, please contact Lucy Pegler, Patrick Parkin, Amanda Leiu or a member of Burges Salmon's data team. 

This article was written by Beth Jewell and Victoria McCarron.