Data-driven research saves lives

Philippa Brice

5 July 2022


One of the most important drivers for the profusion of new NHS data and digital policy in recent months is the recognition that it can enable real improvements in health experiences and outcomes.

Digital technologies allow the capture, sharing and analysis of increasingly complex forms of data; insights from that data (including those obtained via machine learning) can predict, diagnose and characterise disease earlier and more precisely than ever before. Besides the obvious clinical applications, there is also scope to understand and help solve much wider issues of service delivery, health improvement, and the more nuanced health and care needs of population groups and sub-groups.

This is why the Data saves lives government policy updated last month includes a raft of measures to support data use and underpin innovation in the NHS, building on the unique asset of longitudinal health records for large and relatively diverse population. The paper sets out the government’s ambition that the UK should have ‘the most advanced and data-enabled clinical research environment in the world’.

Laying the digital foundations for research

This vision hinges on interoperable digital records and infrastructure to make it much faster and easier to plan, design, recruit patients to and deliver clinical studies, widening access to research and reducing health inequalities. This includes creating suitable Trusted Research Environments (TREs) where different types of health information can be brought together, as set out in the Goldacre Review, through the Data for Research and Development (DRD) programme. These include clinical and social care data, what is termed ‘individual-generated data’ from monitors, wearables and trackers (a subset of what is also known as citizen generated data), and genetic and genomic data. It also emphasises the need for innovative research designs and progress in areas such as genomics, cell-based therapies and digital therapeutics.

The PHG Foundation response to the recent Commons Inquiry on Digital Transformation in the NHS noted the critical role of digital technologies in capturing, analysing, integrating and sharing the insights from increasingly complex information from new forms of testing and imaging, not least genomic and clinical data. It also reiterated our earlier calls for NHS development take into account the potential of citizen generated data for health, so it is good to see this already reflected in policy.

A focus on genomics

Interestingly, the Digital Transformation in the NHS inquiry also posed the question of the most appropriate timescale for incorporating genomic information in patient records. It was not specified what was meant by this. Our response said that the results of testing via the National Genomic Test Directory should certainly be incorporated into electronic health records with all speed, but including larger-scale genomic information would pose different challenges. This, we cautioned, would require careful future-proofing including data standards and access via data intermediaries such as TREs.

We also noted that there will be an increasing need to include genomic data with relevance to research (for example, suggesting eligibility for clinical trials) as well as immediate clinical care in electronic health records, and this ‘will need careful consideration to ensure there is no confusion or conflation between these two categories of information’. Genomic data is critical to the design and delivery of many forms of clinical trials, not least in oncology.

Making the most of genomic data is similarly a key theme in the NHS Data Saves Lives paper (published just days after the inquiry closed) and it contains specific commitments to:

  • Bring together genomic data – presumably from within the NHS and the other three genomic database giants, Genomics EnglandUK Biobank and Our Future Health
  • Ensure genomic data from clinical care is reflected in patient records (by the end of 2023)
  • Convene a collaborative UK genomic data working group of experts ‘across the UK’s genomic healthcare landscape’ to help maintain public trust in the safe, appropriate and responsible use of personal data for both clinical care and research.

Although this genomic data working group is to be formed by June 2022, there is no public information yet about which individuals and organisations may sit on it, rather reflecting the somewhat opaque National Genomics Board. This group was established in 2018 to oversee implementation of the recommendations of the 2016 Generation Genome report, and presumably drove production of the excellent Genome UK national genomic healthcare strategy. However, no meeting minutes or reports have ever been made publicly available and the recorded membership of the group, at the time of writing, is at least three years out of date.

It is probably desirable that this new genomic data working group should be more visible, if it is to underpin public trust in this important and sensitive area of data protection. It may very possibly be the same body as the Genome UK Implementation Coordination Group Data Working Group, which is reportedly leading efforts to create linked (and where possible, federated) genomic datasets from across health data systems. The membership of this group is not public.

Enabling clinical research

Wider commitments to support clinical research in Data Saves Lives include:

  • Creating datasets that combine different types of health information through the DRD programme
  • Building on platforms such as NHS DigiTrials to support the best use of data and digital tools for faster, more efficient and effective clinical trials
  • Publishing a Future of UK Clinical Research 2022-2025 implementation plan to include research enabled by data and digital

In a possible record for the speedy delivery of policy commitments, this plan was released last week by the NIHR.  The Future of UK Clinical Research Delivery: 2022 to 2025 implementation plan includes £150 million funding from the NIHR and £25 million from was developed with partners from the Clinical Research RecoveryResilience and Growth (RRG) programme and, alongside the up to £200 million government funding previously allocated for the DRD programme.

The plan is intended to mirror the wider vision to create a patient-centred, pro-innovation, digitally enabled (and globally attractive) clinical research environment in the UK. It includes measures to boost clinical research across the NHS, making it a normal and visible part of care, and changing design to make it more inclusive and accessible. This includes developing the infrastructure to enable people across the UK to participate in research. The plan emphasises workforce planning and support, and an improved, streamlined regulatory environment to include fast-track ethics approval systems. The Association of Medical Research Charities (AMRC) will also work with NIHR and NHSE to help support people-centred research.

All together, these policies and plans are consistent, coherent and very challenging, setting out the scope for a truly transformative approach to embedding data and digital systems in the NHS for care and research. A shared vision is an essential beginning, but the next few years will be critical to see whether government and stakeholders across the relevant sectors – including patients and the public – can work constructively together to achieve such monumental change.

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