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Friday, July 12, 2024

Health Care Data Is a Researcher’s Gold Mine

The UK’s National Health Service should aim to become the world’s leading platform for health research and development. We’ve seen some great examples of the potential we have for world-class research during the pandemic, with examples like the RECOVERY trial and the Covid vaccine platform, and since then through the partnerships with Moderna, Grail, and BioNTech. However, these examples of partnership with industry are often ad hoc arrangements. In general, funding and prestige are concentrated on research labs and early-phase trials, but when it comes to helping health care companies through the commercialization stages of their products, both public and private sector funding is much harder to access. This makes it hard for startups partnering with the NHS to scale their products and sell them on the domestic and international markets.

Instead, we need a systematic approach to leverage our strengths, such as the scale of the NHS, the diversity of our population, and the deep patient phenotyping that our data assets enable. That will give us the opportunity to generate vast amounts of real-world data about health care drugs and technologies—like pricing, performance, and safety—that can prepare companies to scale their innovations and go to market.

To achieve that, there are obstacles to overcome. For instance, setting up research projects is incredibly time-consuming. We have very bureaucratic processes that make the UK one of the slowest places in Europe to set up research studies.

Patients need more access to research. However, there’s really poor information at the moment about where clinical trials are taking place in the country and what kind of patients they are recruiting. We need a clinical clinicaltrials.gov.uk website to give that sort of information.

There’s a significant problem when it comes to the question of patient consent to participate in a R&D. Legally, unless patients have said explicitly that they want to be approached for a research project or a clinical trial, they can’t be contacted for that purpose. The catch-22 is that, of course, most patients are not aware of this, and you can’t legally contact them to inform them. We need to allow ethically approved researchers to proactively approach people to take part in studies which might be of benefit to them.

For example, during the pandemic, many of those protections were overridden by the emergency legislation that governs the use of health data during a public health emergency. This allowed various research projects to take place. One such project, which involved Health Data Research UK and the British Heart Foundation, looked at the number of people who had missed regular cardiovascular checks because of Covid. The study found that approximately half a million people who missed their appointments should have already been prescribed statins a long time ago. Without that medication, they are currently at increased risk of stroke and heart attack. We actually know who these people are and, ideally, we should be able to inform and support them as soon as possible, offering tests to check their blood pressure and cholesterol and prescribing the right course of medication.

This kind of approach could be scaled across every disease, marrying population health research to the delivery of personalized care. It will require a new approach to using patient data, based on public trust and not emergency legislation, but is the kind of paradigm shift needed to make the NHS a world-leading platform for preventative health care and medical R&D.

This article appears in the July/August 2023 edition of WIRED UK magazine.

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