Andrew Davies, digital health lead at the Association of British HealthTech Industries, explores why there is a need for greater data sharing across healthcare
CREDIT: This is an edited version of an article that originally appeared on Digital Health
The Wade-Gery review, published at the end of 2021, provided a top-level view of how the NHS could put ‘digital and data at the heart of transforming the NHS’. It highlighted that the lack of alignment in strategy and infrastructure ‘creates friction for the sharing of data’. This friction is felt acutely by commercial organisations trying to work with NHS data. Access to well-curated and trusted health data is a vital resource for the life science industry to develop innovations that can save lives, manage the burden of disease and support the efficient use of health resources.
A report from the Open Data Institute on Secondary Use of Health Data in Europe ranked the UK highest across Europe, so we look to be in strong position; yet we know there is more that can be done to support greater use of data, enabling it to flow through the system seamlessly, in order to deliver better patient outcomes and experience whilst supporting innovation. Excellent overall performance masks some areas where we could do better, however; the UK score for innovation was weaker than our overall score – and second lowest across all the domains measured. The reason for the score was the unrealised opportunity of secondary use of health data and under investment in electronic health record (EHR) systems.
Streamlining data-sharing
This got me thinking back to the EY report of 2019 which valued NHS data at over £9bn, garnering a lot of headlines at the time. This report highlighted that the life science industry had a sizeable role to play in realising the value of the data and the ‘creation of wider economic benefits to the UK’. It is, therefore, crucial that data-sharing with commercial entities is streamlined – and there are a number of elements that can support this including governance, infrastructure and culture.
Governance of NHS data sits within the UK General Data Protection Regulation, the common law duty of confidentiality and, when used within digital health technologies, the regulation of medical devices. These regulations, however, are not aligned or applied consistently. For commercial organisations this is most visible in the local governance rules on data-sharing in NHS trusts, integrated care systems or health boards. Local variances in interpretation of information governance rules vary widely, and impede the routine flow and analysis of health data.
The Health Data Strategy (2021) made a commitment to ‘share anonymous data for the benefit of the system as a whole’. This commitment should also extend to sharing with industry/ researchers for broad use, under an appropriate governance framework. A common regulatory and governance framework, processes and templates should be centrally arranged and support deployment at national, regional or local level. This could be enabled by the Centre for Improving Data Collaboration, supporting data-sharing partnerships between NHS trust and commercial entities, and ensuring that conditions and fees for data use are non-discriminatory, proportionate, objectively justified and not restrictive of competition.
Barriers to accessing data
The National Data Strategy (2020) highlighted that the barriers to accessing data represent a significant limitation on research; specifically in health, there are issues in the quality, completeness, interoperability and accessibility of national data, and the life sciences industry has identified a number of systemic barriers that limit access to data – these include the time taken to access data, access constraints for commercial users, the effort needed to identify and assess the quality of datasets and, most notably, the cost of the data itself. These barriers could be lowered by building a robust infrastructure for data-sharing.
At time of writing we are still awaiting the report from the Goldacre review into Health Data for Research and Analysis. If published, I am optimistic that there will be support for further investment into Trust Research Environments. Using a federated model to store and access information has been shown to work in multiple countries and we already have excellent examples across the UK such as SHIP, SAIL and OpenSAFELY. These could provide timely and secure access to health and care data – although it is crucial that industry has access to such environments and the ability to import their own algorithms, tools and platforms. Before the benefit of utilising anonymised patient data for clinical research can be fully-realised some of the barriers to interoperability and standardisation need to be overcome; this includes addressing the issues caused by the deployment of a wide range of EHR platforms.
Give it time
It is going to take some time and significant resource though, as the cost of aggregating and curating patient records is estimated at £2-3bn, though the benefits will far outweigh this in the longer term. As the Health Data Strategy is finalised it will be vital to see these issues being tackled, and that the necessary funding is made available, both centrally, and through trusts and health boards.
The Wade-Gery review highlights the need to re-prioritise spend to lift the quantum devoted to digitally-enabled system transformation in order to ensure that local organisations have the capacity and infrastructure in place to collect and analyse data.
The health technology industry has a range of skills, resources and tools that could support the NHS to deliver significant clinical and system efficiency insights. Policy and practice should encourage and facilitate private-public partnerships to help the NHS realise the full potential of the data asset. We recognise that, when it comes to data-sharing, there needs to be an exchange of value, and this needs to be determined in the wider context of the economic value that can be returned to the UK by utilising NHS data within commercial partnerships.
Of course, this needs to be undertaken ethically and transparently, recognising the concerns of patients and society. There is widespread support for harnessing data for public benefit; however, there is less certainty over the sharing of data with private companies. Without access to this data many innovations may never become readily accessible to NHS patients. Communications from government and the NHS need to highlight the role of industry in supporting the health service in delivering new breakthroughs in prevention, diagnosis and treatment.
Without the measures outlined above the UK could miss the opportunity to become a world leader in ethical data use and medical discovery – in turn, losing the associated economic growth, jobs and clinical breakthroughs.
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