Scientists and academics collect facts and statistics for research and analysis, and this is commonly called ‘data’. Data comes from a range of sources. Some from specific research studies, which are set up to generate data, but increasingly from day-to-day data often referred to as ‘real world evidence’ – that is generated for various reasons; weather, finance, education and so forth.

Have you ever considered how much data we generate about our health during our lifetime? Data will be collected every time we visit our GP, have a vaccination, attend a hospital appointment, when a prescription is dispensed, blood taken, scan results released – the list goes on. Even the data generated from our fitness devices is unique data about ourselves. If this could be linked together and aggregated to larger scale populations, with linkages to where we live, our demographics, census data, and eventually our cause of death, just think how useful that information could be to medical science.

Your health data is not only important for your personalised care, management and prevention of diseases, but also to improve healthcare for everyone. Good quality data enable rapid and transformative advances in healthcare. We could also map what interventions work for both individuals and populations, and improve health care and services across the NHS.

If data from many different patients are linked up and pooled, researchers and medical professionals can look for patterns in the data, helping them develop new ways of predicting or diagnosing illness, and identify ways to improve clinical care.

Using health data in research helps us understand diseases and health conditions – for example, understanding their causes and symptoms and knowing how many people are affected. It provides new ways of identifying people most at risk of becoming ill, diagnosing diseases earlier, and providing better care and treatment. And it helps health services to run more efficiently and effectively, so everyone can get the care that they need.

So, there is huge potential to make better use of information that can be obtained from individual patient records. Every day, large amounts of health-related data are generated by the NHS and other health and care services

Health data research is a rapidly expanding and developing area. It combines maths, statistics, and technology to manage and analyse very large amounts of different health data sets across our health and care systems. It is a way of gathering, analysing and linking information about people and their health.

An example of how improved knowledge helped solve a challenging problem is COVID-19. Combatting the pandemic depended upon the ability to collect, link, access and use health data for research. It allowed the NHS to identify and protect millions of people at high risk of COVID-19, to deliver and monitor the safety and effectiveness of the COVID-19 vaccinations programme, and to identify life-saving treatments for COVID-19 and to rapidly track new variants of the virus.

Despite all the potential benefits for the use of health data, many members of the public rightly remain concerned about their personal health data being used in this manner, without their explicit consent. After all, your health data often contains sensitive information about you that not even your close relatives may be aware of. Data privacy and confidentiality is therefore incredibly important in health data research.

It is true that researchers can apply to access health data for research and innovation. However, there are strict controls and governance processes on how it can be accessed. The purpose must be approved before anyone can use the data, and they are only granted access to the minimum amount of data necessary.

Organisations such as your GP practice or hospital, which holds your data, are referred to as data custodians and are responsible for keeping your data safe. Every member of staff who works for these organisations has a legal obligation to keep information about you confidential. Where systems have been set up to collect data from the data custodians, for example by NHS Digital, the organisations collecting the data have responsibility for it. Once it has been collected, unless permissions have already been granted – your informed consent – the data is de-identified, so any traceable information such as names are removed before being released for research. You should understand how your data will be used, who will access it, and for what purposes. Balancing consent with the need for research can be complex.

Health data research has huge potential to transform healthcare, both today and increasingly in the future. I am currently involved in a large National Institute Health Research (NIHR) programme, which is using a wide range of nationally available health datasets and deploying AI techniques to study multiple long-term conditions – from prevention through to early diagnosis and prediction of the success of possible interventions.

The benefits are potentially rapid and could be game changing. However, as this is a fast-moving new approach to health research, we need to remain vigilant and to keep ethical concerns and personal data protection front of mind.

www.understandingpatientdata.org.uk