As a society we produce enormous amounts of data on every aspect of human life from day-to-day activities to life changing medical care. The healthcare, commercial and research communities have a crucial responsibility to manage and utilise personal health information to its full potential to improve the health and wellbeing of individuals and society. Data in its original context is valuable but its power increases greatly in combination with other data sources. However, if not carefully managed, so can the risks that the data can be used or exploited for different purposes. Most of the public are in support of and expect health data to be used to benefit themselves and others as long as this is secure and appropriate. They rightly need reassurance, clarity and transparency of process and purpose.
‘Are we getting the most benefit out of the data available?’
The recently released ‘Uniting the UK’s Health Data: A Huge Opportunity for Society’ review of the UK health data landscape written by Professor Cathie Sudlow, was commissioned by the Chief Medical Officer, the UK National Statistician and NHS England’s National Director for Transformation to review the current health data landscape across the UK. Cathie has produced a broad and detailed review of the huge number of different types and sources of data, the barriers to effective data use and recommendations for how these barriers can be overcome. The report demonstrates that no, we are not getting the most benefit out of the data available to us. The actions needed to turn this around are wide ranging, complex and involve many different cross-cutting stakeholders.
The NHS provides a unique opportunity to harness data for almost the whole population
Over 98% of people in the UK receive their healthcare from the health systems across the UK’s devolved nations meaning that the UK in theory has an abundance of health data. This originates from a wide range of sources from routine interactions with the health system to nationally collected data in research projects such as the UK Biobank, the 100,000 Genomes project and Our Future Health. The report recognises that the COVID-19 pandemic showed how disparate health information can be linked and shared at scale to benefit the public. It also considers lessons learned from previous initiatives, like the lamentable National Program for IT which was abandoned in 2011, such as ensuring consultation and engagement at all levels of the healthcare system to improve implementation of new data strategies.
Yet the report highlights that as a developed nation the UK has not kept pace with other nations of similar capacity and does not have a digitised, integrated and accessible health data system. The UK health data landscape is frustratingly complex and fragmented. Whilst data sources such as UK Biobank have been successful in providing detailed, largescale and linked data for clinical research these successes have been the exception rather than the rule.
UK health data systems are held together by a multitude of different computer systems which are subject to complex statutory and common law data frameworks which has greatly reduced data interoperability and the opportunity to properly utilise this information. This reflects multiple piecemeal attempts over the past 20 years of trying to unify and simplify digital health data in the UK. This lack of consistent and coordinated data sharing directly impacts on patient care, creates unnecessary delays and causes frustration and confusion for all involved.
Several documents regarding data sharing and management have preceded this report including the Wachter Review, Digital Transformation in the NHS and the Goldacre Review, all advocating the necessity of harnessing the UKs health data. Multiple governments have repeatedly committed to investing and developing this area, yet the pace of change is slow. This review has taken a balanced and thorough UK wide approach, rather than focussing on individual nations and considers the benefit of incorporating data outside of direct healthcare to further increase its utility. It presents five new challenging and ambitious recommendations that are reflective of the urgent need to tame the health data siloed across the UK.
A paradigm shift from data lending to data reading
The overarching theme of the recommendations is the need for coordination to develop consistent data strategies overseen by a newly created national health data service. This service would become a single national health data access system, although only for England at this stage, and implement an acceptable, transparent investment strategy for health data infrastructure. All major national public bodies that generate, collect, manage, curate, fund or use health-related data would need to commit to and support a national health data service.
One of the recommendations recognises that we can begin to de-convolute the health data landscape with the use of secure data environments (SDE). SDE (also known as trusted research environments and data safe havens) are secure computing platforms that store large amounts of data and provide remote, secure access for data analysis at scale. Several SDEs have been in operation for a number of years, with more in the pipeline. These existing SDEs demonstrate the power behind securely combining data sources in the wider health service. At this stage a UK-wide SDE accreditation system for SDEs will be crucial to the further success of this system. At PHG foundation we have been investigating SDE’s. The recent policy briefing ‘The federation of trusted research environments for genomics and health’ by Dr Elizabeth Redrup-Hill examines these environments in the context of data federation, so we are pleased to see them feature prominently in the report recommendations.
The recommendations widely encompass the logistical and organisational factors that need to be addressed to harmonise the UK’s extensive health data and recognise that consistent and clear leadership is needed to move forward. Public support for data sharing is conditional on confidence in security, anonymity and appropriate access. A national data service will have an immeasurable number of moving parts all of which will need to adhere to a complex network of data protection legislation to ensure its success and uptake. Development of a clear and proportionate governance structure, as covered in Recommendation 4, is required to mitigate the risks of data sharing at scale without adding additional bureaucracy and stalling progress.
However, there are also additional nuances yet to be considered including developing and bolstering the public trust in a largescale data sharing system. The matter of data quality is not covered in the report. The UK has an almost boundless supply of health data, but that does not mean it is high quality or comprehensive coverage. A national data service will need to address existing problems such as poor representation of certain population groups in datasets, bias in others and the wealth of historical data that could provide further health insights but currently has no avenue for analysis. Moving forward more consideration will also need to be given to the impact of high-volume data created by processes such as whole genome sequencing (WGS) and novel technologies associated with complex artificial intelligence (AI) algorithms.
A call to action and a call for action
Efficient and secure data sharing can produce transformative insights into healthcare however fulfilling the potential of health data to improve lives is not straightforward and the complex and fragmented nature of our current system is holding us back.
Professor Sudlow says ‘we are simply not maximising the benefits to society from the many already existing sources of health-relevant data….there is a huge opportunity…to capitalise on the UK’s substantial health data assets, and accelerate towards a future where the power of health-relevant data is fully realised’.
The Sudlow report highlights that the UK already possesses many of the building blocks required to create a world-leading accessible health data system, yet the current landscape prevents us from harnessing the truly untapped potential of UK health data. Whilst this is a vast undertaking the report sets out a considered and rational roadmap towards unified health data in the UK. By recognising and treating health data as critical national infrastructure which underpins the health of the nation and as termed in the report ‘making the simple easy…and the difficult possible’ the UK can begin to translate the recommendations into positive action. The outcomes and insights provided should serve to galvanise policy makers, healthcare professionals and funders to unite the existing resources and insist upon national interoperability going forward if we want to bring the UK to the forefront of health data utilisation. Let’s hope that this time the recommendations are acted upon and previous barriers to implementation can be overcome.