Hidden in plain sight: The untapped power of data for personalised health

14 July 2025 to 25 July 2025 is PHG Foundation’s personalised health fortnight. Follow and share the campaign on LinkedIn

Healthcare of the 21st Century is evolving. In the place of a conventional symptom-treatment model, enormous developments in medical knowledge and technology have paved the way for the innovation of ‘personalised health’. This presents a major shift in how individual health and disease states are considered and utilised to maintain good health for longer and resolve illness quicker.

Personalised health is a holistic ‘whole person’ approach to healthcare that considers genetic, environmental and lifestyle factors unique to each individual. The development of biomarkers, which are indicators of normal physiological processes, disease processes and responses to biological interventions, is driving this shift.

The data revolution in healthcare

We now live in a highly data driven world and healthcare is no different. Use of biomarkers produces enormous amounts of health data. This can include basic physiological measures like height and weight to complex imaging, such as positron emission tomography (PET), or entire human genome sequences. Each singular piece of data may be collected for a specific purpose e.g. blood pressure may suggest cardiovascular disease risk.  But when combined with additional pieces of healthcare data the power of the information can increase enormously. For example, the combination of blood pressure measurements with additional physiological markers (e.g., blood cholesterol), genetic predisposition, or socio-economic factors results in a much more accurate risk prediction. This not only informs diagnostic procedures but can also be used to improve decisions about treatments and lifestyle changes.

Additionally, highly specific genetic data can be aggregated into expansive panels to screen people and determine their individual risk to a range of diseases. Polygenic risk scores (PRS) are generating significant research and clinical interest, with some already in regular use for investigative studies or to supplement clinical decision making. However, they are not yet recommended for routine use due to the need for more evidence on clinical utility.

Navigating the UK’s health data landscape

At the heart of personalised health therefore is data; every test, assay and interaction produce some kind of data output which holds key individual information. Almost 90% of healthcare in the UK is delivered by the NHS, which offers a unique and powerful opportunity to lead in personalised healthcare. The NHS holds a huge volume of untapped data that could impact the individual and the nation.

The UK healthcare data landscape is unfortunately fragmented, inefficient and has poor interoperability between systems. It is a victim of the piecemeal introduction of multiple different computer systems, complicated statutory and common law frameworks and a lack of long-term planning. This has resulted in an unwieldy system containing an almost overwhelming volume of siloed information.

Recently, The Sudlow Review highlighted the extent of underutilised healthcare data in the UK. In her landmark report Professor Sudlow argues that we must ‘recognise our national health data for what they are: critical national infrastructure that can underpin the health of the nation.’

Our health system is at a crossroads, according to “Fit for the Future: 10 Year Health Plan for England,” facing the stark choice to “reform or die.” While this applies to the NHS, this mantra also holds true for the health data network. The 10-Year Health Plan’s “From analog to digital” shift is vital for data improvement but remains an unfulfilled NHS priority. Past attempts reveal issues with a complex stakeholder landscape, underfunding, and poor governance. Cumbersome patient data access for care and research further impedes digital utilisation.

Are silver linings on the horizon?

Yet despite this rather gloomy forecast there are rays of hope; professional bodies, research communities and policy makers are improving their recognition and understanding of the power held in our data.

The announcement of the Health Data Research Service demonstrates that action is being taken. The service will provide centralised access to broad health datasets aiming to reduce barriers to research and enable researchers to more easily analyse aggregated health data. For example, a researcher could have a single access point for both treatment and mortality data to examine survival times after a particular intervention. Currently this process requires multiple time-consuming data release requests. This will more rapidly provide deeper insights into health and disease and create opportunities for further development of personalised healthcare.

The Physiology Society also has its sights set on improving data use for personalised healthcare. In collaboration with PHG Foundation, the Society recently released their report ‘Physiology Passport: Putting personalised prevention at the heart of resilient health systems’. The report presents the concept of a ‘Physiology Passport’ serving to collate all electronic health information regarding an individual into one place. This data can be used to establish ‘parameters that define good health for them as an individual’. This ‘baseline’ health status can then be used to investigate what is normal and abnormal for an individual.

While a unified NHS patient record could enable personalised and predictive care, sceptics see it as a rehashed concept with persistent issues. Its feasibility, security, and cost raise concerns, demanding transparent governance and robust data security to safeguard both information and public trust before implementation. Without public support and cooperation, data gaps will erode the reliability and accuracy of the information that is available.

Policymakers, clinicians, researchers, and stakeholders must grasp our data capabilities, needs, and pathways to achievement. The goal shouldn’t be more data but making the best use of what we already have.

The Sudlow report’s recommendations are gaining traction, with professional organizations also starting to prioritise data initiatives. We must capitalize on this initial momentum to simplify the data landscape, which could revolutionise personalised healthcare.

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