Making sense of complex health data Mark Avery, Director of Health Informatics at Eastern AHSN, explains Eastern AHSNs role within Cambridges world-leading health informatics community. Health informatics is the science of how we collect, analyse and use data to generate information and intelligence to improve peoples health. Healthcare researchers frequently work with huge volumes of data that need to be arranged, manipulated and analysed, often in combination with other datasets, to be useful for research. Protecting individuals privacy is also critical and the use of personal data needs to be transparent, which may require securing appropriate consent from patients and research ethics approvals. With advances in processing power and the understanding of genomics, we are facilitating the use of health informatics to spot trends, advance research, develop medicines and help patients access effective treatments faster. Eastern AHSN has considerable experience and expertise in helping innovators and research organisations to collaborate through better use of healthcare data by building and connecting datasets within secure data environments. Such environments support access to (rather than sharing of) subsets of data for specific, approved researchers to answer specific, approved research questions enabling research and protecting peoples privacy. Enabling smoother data sharing across organisations One of the projects we support is CYNAPSE, a project to build a common data architecture so that genomic and other biological data may be shared effectively and safely, initially across the Cambridge Biomedical Campus. CYNAPSE enabling clinical collaboration and innovation by allowing researchers to work jointly on datasets held in separate locations. This is achieved using a process called data federation. Data federation builds a bridge between research environments to Did you know? The CYNAPSE project, alongside Genomics England, has enabled the first federated analysis of genomic data between a national programme and a higher education institution in the UK enable researchers to leave very large datasets in situ and analyse them remotely, while ensuring peoples privacy is protected, pulling only the results into a secure and trustworthy The CYNAPSE platform is owned by the University of Cambridge and has been established and funded by the National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre research environment. Having convened partners and project managed the implementation of the platform, this year we saw selected researchers using it for the first time and we are now working to identify other research groups that are interested in joining the platform. Avoiding apples and oranges in health data In 2023-24, we are working with the Biomedical Research Centre (BRC) to extend the CYNAPSE platform to support more research, while also working with health and care providers to embed a common data model that will enable more uniform analysis across different datasets across England and internationally. Working this way will help us better understand global data trends, facilitate smoother international collaboration on research projects and improve the interoperability of health data across different health and care providers. Separate genomic research databases successfully federated A team comprising local healthcare and research organisations in Cambridge was granted funding to demonstrate how analysis can be undertaken across separate, secure and remote databases simultaneously, as if they were one, using a datafederation approach. The funding came from UK Research & Innovation as part of Phase 1 of the Data and Analytics Research Environments UK (DARE UK) programme, which is delivered in partnership with Health Data Research UK (HDR UK) and Administrative Data Research UK (ADR UK). The DARE UK project was led by the University of Cambridge as part of the Professor Serena Nik-Zainal talks about the potential for research to use different datasets without having to move the data National Institute for Health and Care Research Cambridge Biomedical Research Centre (NIHR Cambridge BRC), working with Genomics England, with platform and technology innovation from UK enterprise Lifebit, project management from Eastern AHSN and Cambridge University Health Partners and was supported by patient and public representatives throughout. Collectively, partners delivered what we believe to be the UKs first demonstration of genomic data federation by bridging the research environments of the NIHR Cambridge BRC and Genomics England to enable researchers to access and work with both databases safely without moving original data, only the combined analysis results. The final report, Multi-party trusted research environment federation: Establishing infrastructure for secure analysis across different clinical-genomic datasets, evaluates the impact of the project and shares learning that can be applied to future healthcare data programmes. Building health data research around patient involvement We were a key partner in the development of Gut Reaction, a secure data resource to facilitate academic and industry research into inflammatory bowel disease (IBD). The platform draws together the data of thousands of patients enrolled in the NIHR BioResource, who have already provided consent for their health records to be used for medical research. Approved researchers can retrieve this information to use in conjunction with real-world data from participating NHS hospitals Read more about Gut Reaction here and the UK IBD Registry. The project involved building the technical architecture to create a secure research resource and ensuring there are robust processes in place to involve patients in decision-making about how approved researchers access data while protecting the privacy of individuals. We worked closely with our Patient Advisory Committee to involve it in the design and implementation of a new data-access process for the platform. This patient-centred approach was Share this article recognised at HDR UKs annual awards in December 2022, where the project won the Public and Patient Involvement and Engagement Award. If you want to learn more about our work in health data research and informatics, or how we can support innovators in their digital and data science capabilities, contact us at healthinformatics@eahsn.org. Return to About Us Up next: Read how we measure the impact an innovation is having on all sectors.