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Nora Cavani, chief executive and co-founder of Alba Health, argues that the NHS doesn’t need more data – it needs better data.
It is a familiar situation for anyone who has struggled with an ongoing health issue: You explain your medical history to a GP, who refers you to a specialist, who asks you for your medical history before referring you to another specialist, who asks you for your…
Patients are frustrated, and rightly so, but so are the doctors and specialists who have to waste precious minutes listening carefully to information that they could have read before the appointment. Imagine if all this information were written down somewhere?
Mercifully, the NHS’s 10 Year Health Plan has acknowledged this problem – and even come up with a solution. The single patient record (SPR) is scheduled to be rolled out in 2027 in key sectors (maternity and elderly care) and be available for all patients by 2028.
Problem solved? Well, not exactly. While the SPR is a welcome reform, it is the data itself that is the problem, rather than where it is held. As they stand, patients’ health records do not log continuous biological changes that occur during a lifetime, they simply document the various interactions of an individual with the healthcare system.
That means that while these records are useful for the treatment of acute conditions, they are less useful for chronic conditions – and preventative healthcare in general. In order to collect and store that data, the NHS would need more than tweaks, it would need a whole new digital records system.
The signals are already there – but we’re not looking
Consider the fact that a 2024 study of British children found that one-in-four had developed a chronic health condition by age 16, or that one-in-three people in the UK are living with some sort of allergy. Innovation agency Nesta estimates that £200 billion could be saved by 2040 if that growth rate was halved – £500 billion if it was halted altogether.
In some areas, the NHS has already proved that it can detect early biological signals: newborn bloodspot screening, for example, has diagnosed conditions like phenylketonuria early enough to enable dietary interventions that prevent brain damage.
There are hundreds of peer-reviewed studies from major birth cohorts, including HELMi, CHILD, COPSAC, DIABIMMUNE, and WHEALS, that have pointed to the importance of the early childhood gut microbiome as a key factor in allergies, asthma, eczema and weight, as well as susceptibility to respiratory infections.
Willem de Vos, a prominent microbiome scientist, has shown that early microbiome composition can predict outcomes before symptoms appear.
Meanwhile, a landmark study found that one of the most critical pioneer microbes in early life, Bifidobacterium infantis, is absent in British infants, despite remaining common in babies from sub-Saharan Africa and South Asia.
What better data would actually look like
These are not theoretical risk signals. They are measurable, present from birth, and entirely absent from the health record. Currently, they’re not logged by GPs or maternity departments, and yet if they were, then we could arguably prevent allergies, asthma and eczema at scale.
The private sector is already moving fast. Google’s $2.1 billion acquisition of Fitbit in 2021 – a deal which was scrutinised in part for its implications for health data at scale – is telling. Big tech clearly understands the value of longitudinal biological data; real capital is moving in that direction. The question is whether the NHS will define its own ambitions broadly enough to compete on public health grounds before that opportunity passes.
The NHS has already committed to integrating genomic data and predictive analytics into the SPR and taking advantage of wearable tech to preventative care. But it still doesn’t incorporate microbiome tracking or longitudinal biological monitoring in early childhood, which is where the prevention opportunity is arguably the largest.
What we need is a data infrastructure that follows children all the way from birth, monitoring microbiome development, diet, and early symptoms alongside standard clinical records. Nesta suggests that primary prevention delivers four times the health benefit per pound spent compared to treatment. Our current system is back to front.
The clock on preventable chronic disease in childhood is already running, and the data that could change that is not in the system at all.
