The amalgamation of medical information could revolutionise health research

The furore over the NHS scheme to amalgamate medical information risks overlooking the fact that it could herald the future of health discovery and tailor-made care, argues Professor Steve Thornton, Dean of the University of Exeter Medical School.

Here, he outlines how the changes would help revolutionise health discovery, and would particularly benefit the South West, which is already at the forefront of research into tailor-made care. 

Have you received a leaflet about a new NHS scheme on linking up your medical information between care providers? Did you stop to stop to look at the relatively small print telling you it contains “important information about your health records”, or was it scooped up and binned, amid a pile of pizza delivery takeaway menus and discount supermarket offers?

If you haven’t yet seen it, you soon will, and it’s really worth spending the time to understand how your anonymised personal information will be used, as part of a scheme which is absolutely integral to our ambitions for a healthcare revolution, and working towards tailor-made healthcare solutions to match each patient’s needs into the future.

This month, NHS England decided to delay the amalgamation of information from sources such as GP surgeries and community hospitals, after a survey revealed that two thirds of those polled had not received the leaflet informing them of the changes. Equally worryingly, 80 per cent of GPs felt that they did not grasp the changes well enough to explain them to patients.

Nothing is more personal than medical records and clearly, everyone needs to understand how the new scheme will affect the storage of their information, and how it will be anonymised and used. It’s absolutely right that they should have the chance to opt out – a choice which is built into the system. But if you have ever donated to a charity which researches any of the major health problems of our time, such as cancer, diabetes, or heart disease, you should think twice before you rule yourself out of the new system.

Of course funding is crucial to enable research, but equally as vital is access to large-scale datasets which can help us identify what’s really going on in a population. Looking at diseases on this massive scale can help us understand the causes in individuals, and that in turn can lead to the development of treatments designed specifically to treat that cause, rather than a more broad-brush approach which can be less effective, and can leave people enduring unwanted side effects.

At the University of Exeter Medical School, our scientists are already world-leaders in this type of work, with diabetes among our particular specialisms. We work extremely closely with clinicians, and our newest research centre is a partnership with the Royal Devon and Exeter NHS Foundation Trust, based on the hospital site. This close collaboration at the spectacular Research, Innovation, Learning and Development (RILD) building, which fronts onto Barrack Road, means we have an ongoing dialogue, so our research directly addresses patients’ needs and innovation pervades treatment.

Our recent discoveries include identifying new genetic causes for neonatal diabetes, which affects babies when they are less than six months old.

The new building also houses the Exeter 10,000 project, funded by the National Institute for Health Research, where more than 7,000 people living around Exeter have already signed up to be part of medical research. They undergo a series of simple tests, and their data is then anonymised, and can be analysed by scientists looking for patterns in populations.

This is an incredibly valuable resource, but if we could do it on a national scale, we could have a much clearer idea of these patterns, and that would help us to target our research, which ultimately aims to find new treatments.

Analysing existing large, connected, and anonymised datasets has already enhanced medical knowledge. One example is research using a database of 7,500 people, which assessed  a particular anti-clotting drug prescribed in patients with heart disease.

Before this study, it was difficult to assess the long-term effects of the drug because it was prescribed after patients left hospital and the GP data was not easily analysed because it is not currently stored in a way that can be studied.

Looking at joined up hospital and GP data showed  there was an increased risk of further heart problems if the GP did not prescribe the medication within the first three months of the patient leaving hospital; the medication was stopped within a year of the patient leaving hospital; and in older patients. This understanding changed the way doctors prescribed this drug, and undoubtedly saved patients from avoidable complications. We can only imagine what other life-saving revelations we could uncover if data was shared on a larger scale.

For health watchdogs, monitoring this information can also help identify patterns of how healthcare is delivered, to monitor fairness across the country, and to pick up any warning signs about the impact of prescription drugs.

The NHS now has a job to do to communicate this message in a way that will reach every household, and perhaps that is a greater task now that the headlines generated by this poll have fuelled suspicion. It is essential that people are aware they have a choice, and can access clear information on how their data will be used. But, questionable communications aside, this scheme could actually provide the key to a whole new era of personalised healthcare – a factor much of the media furore has overlooked entirely.


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