Health data research is a way of gathering, analysing and linking information about people and their health to improve healthcare for all.
Using health data for research helps us better understand diseases and health conditions, such as understanding their causes and symptoms or 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.
Health data research has huge potential to transform healthcare, now and in the future. It has played a major role in the COVID-19 pandemic by helping scientists and doctors understand more about this new disease, and enabling the NHS and decision-makers to respond to the challenge.
How does health data research work?
Every day, large amounts of health-related data (known as datasets) are generated by the NHS and other health and care services, and from other sources.
Some of these datasets come from general information about local or national populations, like the number of babies being born or how many people are admitted to hospital on any day. Other types of data are very personal, such as individual medical records or scans.
Data privacy is incredibly important in health data research. In almost all cases, except where it is directly relevant for personal healthcare, any identifying information (such as people’s names) is removed from datasets used in research. You can find out more about this process in this guide from Understanding Patient Data.
Data security is also a top priority. We are working hard to ensure safe, secure access to health data so that legitimate, vetted researchers can carry out their work quickly and efficiently, while protecting sensitive information from falling into the wrong hands.
Health data researchers use sophisticated tools to link different datasets together and analyse them, searching for patterns and insights that can be used to improve health and care. Browse our updates to find out how health data research is making a difference.
What type of data is used in research?
The datasets used by health data scientists come from lots of different sources including:
- Patient data from the NHS and social care, including hospital and GPdata such as dates and times of appointments, through to information about treatment, medical and diagnostic tests
- Studies about the health of groups of people, which may be based on a particular health condition, such as cancer, or issues that affect the people’s health, like smoking
- Data from blood or tissue samples such as information about genetic makeup or biological markers of disease
- Data from images such as X-rays, MRI and CT scans that contain a huge amount of information
- Data from clinical trials investigating tests and treatments for health conditions
- Health and fitness devices, which provide data on things like heart rate, activity and calories.
Who are health data scientists?
Health data scientists come from a range of backgrounds and include health researchers, innovators, technology specialists, mathematicians, and statisticians. At Health Data Research UK our community includes:
- doctors working in the NHS with an interest in using data for research
- academic scientists working in universities who use data to understand human health
- colleagues from industry who are using data to develop new tests and treatments.
Everyone who uses health data for research and innovation has to work within legal frameworks. This includes the strict parameters of the Codes of Practice and the standards set out by the National Data Guardian and regulatory bodies including the Information Commissioner’s Office.
Health data research is for everyone, so it’s important to us that we know what people think about it. We work with patients and the public to find out what matters to them and the kinds of research that should be done with health data. Find out more about our Patient and Public Engagement and Involvement programme.
Have more questions about health data research?
We want to help the public better understand the role and value of health data research in making health and care better for all. We also want to provide reassurance that there are strict safeguards in place to make sure that data is accessed safely and securely, and that people cannot be personally identified from datasets.
We know that people have questions and concerns about how health data is used for research, so we worked with members of our Public Advisory Board to develop some answers to some of the most common queries.