Voices: The data the NHS has collected… Leave a comment
NHS data can be used to save lives in Britain and around the globe (Getty)
Since 1948, the NHS has collected detailed records and data, on tens of millions of patients, from the large and ethnically diverse population of the UK. GP records, as just one example, record almost every NHS interaction – every diagnosis, prescription, test result – for every person in the country.
This dataset – the full medical history of millions – is some of the most powerful health data in the world.
Because of its depth, and the diverse population it represents, NHS data can be used to save lives in Britain and around the world. It can be used to better research pioneering treatments, discover which treatments work best, learn more about side effects, monitor and improve quality and safety across NHS services, drive research and innovation across healthcare, and much more.
Nothing has demonstrated this power in such a short space of time as the UK’s response to the Covid-19 pandemic. Data has played a central role in understanding who is most at risk from Covid-19, identifying new treatments, monitoring vaccine safety and effectiveness, and much more. Now, it will help us tackle the post-pandemic backlog.
Data does not, however, deliver such benefits on its own. It must be shaped, checked, and curated into shape. It must be housed and managed securely. It must be analysed. And then it must be communicated, and acted upon. Most importantly, all of this must be done in the right way.
This is why, last year, the government asked us to lead a review into how we can make better, broader, and safer use of NHS data for research and analysis to help more patients and the healthcare sector at large.
Our review, which was published in April this year, made some 185 wide-ranging recommendations for the government to explore and implement in order to make the NHS’s data fit for purpose for the 21st century.
The recommendations covered five areas – NHS service analytics; modern and open working; privacy and security; trusted research environments; and information governance, ethics, and participation – and centre on the following core ideas:
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Build a small number of secure analytics platforms – shared “trusted research environments” – then make these the norm for all analysis of NHS patient records
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Modernise and uplift the NHS Analyst workforce. Ensure there is a head of profession; clear job descriptions tied to technical skills; progression opportunities to become a senior analyst rather than a manager; and realistic salaries where expensive specific skills are needed
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Promote the use of modern, open, computational methods for analysis and research, and ensure all code for data curation and analysis is shared openly, with appropriate technical documentation, to all data users
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Recognise NHS data curation as a complex, standalone, high-status technical challenge of its own. Meet this challenge with systematic curation work, devoted teams, shared working practices, shared code, shared tools, and shared documentation
Two months after we published these recommendations, the government published its new NHS data strategy Data Saves Lives which – we were delighted to see – very strongly embraced the recommendations related to open working and trusted research environments.
The strategy commits to implementing secure data environments as the default across the NHS, and states that as public services are built with public money, the code they are based on should be made available across the health and care system.
Read more from our series on ‘How to heal the NHS’ by clicking here
Now, of course, the challenge lies in the effective fulfilment of these commitments. This will be a difficult technical task, but this does not mean it should be shied away from. The key will be for the government to work closely with people with technical skills – putting domain experts in senior leadership positions – and to resist the urge to try to change everything overnight.
Instead, the government must build impatiently, but incrementally, gradually proving out new working methods, and building real technical capacity over the next 3-5 years.
This will reap rewards across the global research community, it will drive innovation across the whole life sciences sector, and it will drive change across the NHS, where smart use of data can help improve the quality, safety and cost-effectiveness of all care, for all patients.
Ben Goldacre is a clinical researcher at the University of Oxford where he is director of the Bennett Institute for Applied Data Science, and Bennett Professor of evidence-based medicine in the Nuffield Department of Primary Care Health SciencesJessica Morley is a social science researcher at the University of Oxford where she is the policy lead for the Bennett Institute, and a Wellcome-funded DPhil candidate at the Oxford Internet Institute
