Collecting data doesn't, by itself, improve anything. It needs to be part of a system. We've adopted a data lifecycle model, based on work by Freidman et al (2017), to illustrate this. We are at the heart of the system, working with partners to make sure we use data effectively.
The steps of the data lifecycle model are:
- analyse and interpret
Where relevant, we've used these steps to show where our teams add value to the different stages of the data cycle.
It's important that data we collect is of a high quality. Bad data leads to bad decisions.
We set standards for data, which give clear guidance on:
- what data is required
- what format the data needs to be in
- how to submit the data
We engage with staff in the NHS, especially clinical professionals, to make sure that everyone understands their role in recording and reporting data correctly.
In many cases, we collect data automatically, through systems that the NHS already uses, such as through the electronic health record (EHR) in a GP surgery. This helps staff by keeping the amount of extra work to a minimum.
Data can also be sent to us using tools like OpenExeter.
We assemble data from around the health and care system. We always collect and store information securely and in line with the law.
We check data quality against standards, and provide feedback if it needs to be improved.
Analyse and interpret
Once the data is put together and checked, we begin to make use of it. We work to provide insights that can be used to improve the health and care system.
Our analysis includes:
- decision support – where we help staff make complex decisions using data we have collected
- predictive modelling – where we can predict something is likely to happen, because of data we hold, and the patterns within it
- benchmarking – where we can see the high and low performers, and help target support or develop learning opportunities
- health surveillance – where we can track the spread of infectious diseases, or see the impact of particular treatments or interventions
- comparative effectiveness research – where we can assess the impact of different treatments, to help with clinical studies (randomised control trials or RCTs) or in some cases to remove the need for them
Insights won't improve the NHS unless they are shared. We publish our data and insights in several ways, including:
- statistical publications, on dozens of topics each year – many of these are accredited National Statistics or Official Statistics, making us the government's official source
- clinical indicators, which track individual measures over time
- interactive web interfaces, like our award-winning General Practice data hub
We use anonymised data for all our published outputs, which means that no individual can be identified.
We provide bespoke reports to partners in the NHS, and responses to parliamentary questions and freedom of information requests.
There are times where professionals need access to information where individuals can be identified. For instance, our data has saved lives when patients at risk have been identified through research on such data. Our teams are able to match those records back to real individuals and get them the care they need.
Privacy and data protection are at the heart of what we do, and identifiable data can only be accessed through our Data Access Request Service (DARS), where is assessed by the Independent Group Advising on the Release of Data (IGARD), and subject to a strict information governance framework.
Once insights are released, the health and social care system can start to make improvements. These changes are of all sizes – from an individual to a whole country level.
We work with organisations across health and social care to help them understand our insights, and to make sure that they can deliver effective change.
How our data is used
A range of individuals and organisations use our data to drive change.
Individual patients or members of the public
Individual patients or members of the public can use our data to make decisions about their own health and care, or that of people they care for, including things like choosing a specialist doctor, changing their habits based on new research, or advocating for change.
Health professionals and clinicians
Health professionals and clinicians can use our data to better understand their patient groups, and to identify opportunities to improve their services.
Local provider organisations
Local provider organisations, such as hospitals or GP practices, can use our data to plan their services better and more efficiently, as well as monitoring their performance against other providers like them.
National and regional commissioners
National and regional commissioners can use our data to better understand the changing needs of the population, and to monitor the impact of their policy and work.
Central NHS organisations
Central NHS organisations can use our data to understand population needs and funding requirements, including how these are changing over time. They can also monitor quality of care, using our indicators.
Research organisations, such as universities, charities, think tanks and the life sciences industry, can use our data to research new areas, which helps to better understand a disease or condition, as well as developing new medicines or treatments. They can also assess the efficacy, and cost versus benefits, of individual interventions, or even compare whole health systems.