Each project seeks to demonstrate the technology to inform a more coordinated national data research infrastructure alongside best practice for governance, ethics, and public involvement and engagement.
Eastern AHSN are a partner in two of the announced projects, which aim to uncover and test early thinking in the development of a more joined-up and trustworthy national data research infrastructure.
The projects, which will run for eight months from January 2022, will develop a process that will enable researchers to safely access and work with different healthcare databases without any data leaving either source. The technology developed during the bid will be open source, meaning the global research community will be able to benefit from the collaborative potential of this technology.
The teams will develop potential use cases, demonstrate the technology, and explore best practice for the governance, ethical and public engagement and involvement.
The NIHR Cambridge Biomedical Research Centre (BRC) sought to improve clinical research data infrastructure and commissioned Eastern AHSN to project manage CYNAPSE, a project to build a common data architecture so that genomic and other biological data could be effectively and safely shared across the Cambridge Biomedical Campus.
Speaking about CYNAPSE, Professor Serena Nik-Zainal, NIHR Research Professor and Honorary Consultant in Clinical Genetics, University of Cambridge, said:
“Eastern AHSN’s expertise in helping to find solutions for complex health data challenges has been instrumental to the project’s success to date. This work has the potential to revolutionise research in Cambridge and beyond“
The first project receiving DARE UK funding will build on CYNAPSE to bring together different clinical-genomic datasets from the NIHR Cambridge Biomedical Research Centre and Genomics England for secure analysis. The complexity of sharing genomic information means that this data requires huge amounts of processing to store, move or use for research.
By enabling the datasets to be accessed remotely, this project could ultimately help the research community securely access and collaborate across larger, combined cohorts to leverage the immense potential for collaboration in genomic research nationally and internationally.
The second project is called FAIR TREATMENT (Federated analytics and artificial intelligence research across trusted research environments for child and adolescent mental health), led by researchers at the University of Cambridge with support from Eastern AHSN. This project will combine data research technologies to enable researchers to link and analyse data from different sources, including health, education and social care records, and between three sites without the data needing to be moved (Cambridge, Essex and Birmingham)
Solving these technical barriers will support the development of AI tools for the early identification of mental health problems in young people. The project will additionally consult with patients, the public, organisations contributing data and legal/ethics experts to agree the best way to oversee data use, ensuring it’s managed safely and fairly.
Mark Avery, Director of Health Informatics at Eastern AHSN and Cambridge University Health Partners (CUHP), said:
“Big data technologies and genomic data analysis have improved our understanding of how diseases work and how people respond to treatment. This is enabling the development of new and personalised diagnostics and treatments, and the design of new drugs.
“A key challenge remains because much of this research data is siloed in different locations. The ability to leave very large datasets in situ and analyse them remotely, pulling only the results into a secure and trustworthy research environment, has huge potential for future research globally whilst keeping data secure and ensuring people’s privacy is protected.”
The funding has been awarded as a result of an open call for proposals which ran from September to November 2021. 25 applications were assessed by an independent panel of experts, with the nine successful projects scoring highest in terms of excellence, novelty and diversity.
If you would like to know more about any of these projects, contact [email protected]
This work is funded by UK Research & Innovation Grant Number MC_PC_21026 and MC_PC_21025 as part of Phase 1 of the DARE UK (Data and Analytics Research Environments UK) programme, delivered in partnership with HDR UK and ADR UK. Learn more about the nine projects being funded on the DARE UK website.
The DARE UK: ‘Multi-party trusted research environment federation consortium’ includes University of Cambridge, NIHR Cambridge BRC, Genomics England, Eastern AHSN, Cambridge University Health Partners and Lifebit.
The DARE UK: ‘FAIR TREATMENT’ consortium includes University of Cambridge (Departments of Psychiatry and Genetics), Eastern AHSN, InterMine, AIMES, Kaleidoscope, University of Birmingham, University of Essex, Anna Freud National Centre for Children and Families, Cambridgeshire County Council and Bitfount.
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