Using health data for research helps us better understand diseases and conditions – their causes, prevalence (the proportion of a population in a given time period who have the condition or disease) and symptoms. It can also be used to provide new ways of treating them or spotting them earlier.
Health data research has huge potential and has already been used in COVID-19 research to make a big difference. Using health data can help improve health and care in different ways ranging from early identification of diseases to improving the performance of health systems.
How does it work?
Across our health and care systems we have very large numbers of datasets that all provide different information. A dataset is a collection of related individual pieces of data but in the case of health data research, identifiable information (e.g. name or NHS number) is removed and data is de-identified where possible. In order to manage and analyse these large datasets, there are different types of tools (e.g. algorithms) that health data scientists use to help provide the information needed to make advances and see positive changes in health and care.
What type of data is used in research?
The datasets used by health data scientists comes from lots of different sources. This includes:
- Patient data from the NHS and social care, including hospital and primary care administration data (e.g. 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 (e.g. cancer), or issues which affect the health of people (e.g. smoking).
- Data from blood or tissue samples which can be used to derive genetic information
- Data from images, which include x-rays, MRI, CT images that contain a huge amount of information
- 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
- academics working in universities who are using data to discover new diseases
- colleagues from industry who are using data to develop new drugs
Anyone who uses health data for research and innovation has to work within the legal frameworks, the strict parameters of the Codes of Practice and the standards set out by the National Data Guardian and regulatory bodies including the Information Commissioners Office.
Have more questions about health data research?
We want to help the public better understand the role and value that health data research can bring but also reassure people that there are safeguards in place that should address concerns about the use of health data too. To help us do this we worked with members of our Public Advisory Board to develop some answers to commonly asked questions about how health data is used for research and covers a broad range of topics.