Where we live can have a big impact on our health. Polluted air, damp housing or a lack of green spaces can make people ill or worsen their health.
The GROVE project creates a secure system that can link regional health records with environmental data across England. This would allow researchers to compare regions, spot patterns and see whether their findings apply across England.
Information about our health and the places where we live is often kept in separate systems. Researchers may have information about local air quality or how close someone lives to a park, but they cannot always link it to health records. The GROVE (Governance for Household-Level Environment and Health Data) team brings together researchers from the University of Liverpool and University College London to create a shared data linkage approach that can be used across England.
If we understand more about how the places where we live affect our health, we can design healthier places and help prevent illness. This has enormous potential to both improve health and reduce spending on healthcare.
However, we first need to know which changes really make a difference. At the moment, our understanding of how the environment affects health is still limited. This is even harder when we do not know where people have lived over time. If we can see this data over months or years, we can be more confident about which factors affect people’s health. It can also be difficult to separate the effects of the places where people live from other differences between them.
For example, people with private gardens may be healthier. Without information on wealth, we might think that gardens explain this difference. However, wealthier people are more likely to have gardens and may also be healthier for other reasons.
So far, this kind of data linkage has only been possible in a small number of regions in England. This is partly because the technical work is complex and there are strict rules and checks to protect people’s information. Different data systems also link information in different ways, which makes it difficult to compare results.
What GROVE aims to achieve
Linking detailed data is not just a technical challenge. It can also increase the risk that people or communities could be identified. We want to understand how people feel about these risks and work with them to decide how their data should be used.
Their goals are to:
- Involve stakeholders – work with communities, particularly young people, healthcare professionals and public bodies, to understand their views on linking health and environmental data.
- Develop a national linkage process – create a process for linking regional health records with environmental data, including satellite data and maps of green spaces.
- Enhance privacy – develop new technology to prevent people from being identified in the linked data.
Progress so far
In the first six months, the GROVE team has:
- Developed a privacy framework designed to protect sensitive spatial data about individuals by grouping individual data with data from nearby communities. We have also developed methods to reduce the risk of people being identified after data is linked.
- Worked with information governance teams at NHS England and in Wales and Scotland to understand existing work, concerns and uncertainties.
- Worked with our public adviser to plan our public engagement. We have also worked with animators to create an easy-to-understand video about GROVE.
Over the next six months, we will be releasing our privacy framework for peer review and feedback, testing it in secure research environments and producing clear guidance for linking these data.
We will also hold a series of focus groups with people from different communities to explore how they would like data to be managed and linked within a Trusted Research Environment.
Relevance to the DARE UK vision
GROVE’s work in developing secure, consistent, privacy-preserving and publicly trusted ways to link data across England, will pave the way to solve challenges around connecting various data to answer critical questions. By building the technical capabilities of TREs, developing governance and involving the public, it takes data research to an innovative and safe next-level.
About the DARE UK Next-Gen Catalysts
The DARE UK Next-Gen Catalysts are early-stage, exploratory projects developing and testing the next generation of capabilities for Trusted Research Environments (TREs) across the UK. Bringing together researchers, technology specialists, public contributors and other partners, these projects explore bold new ideas that could expand how sensitive data is accessed, analysed and governed while maintaining privacy, security and public trust. Their role is to generate evidence, prototypes and practical learning that can help shape the future of secure, trustworthy data research for public benefit.
