Helping patients get the best treatment for them, faster Mark Avery, Director of Health Informatics, explains Health Innovation Easts role in maximising the utility of data for health and care in the East of England. Solutions to some of the most important and complex problems facing patients and clinicians lie in data. We need transformational rather than transactional change if we are to address the challenges of meeting the health and care needs of the population over the coming years. New and emerging technologies certainly have the potential to help, but their full potential can only be realised if we routinely join up clinical data at scale across organisations to support healthcare delivery and research. We work with our partners to deliver their digital and data requirements providing data information analysis, interpretation and insight, advice and guidance on IT platforms and storage, technical delivery, optimisation and much more. Health informatics is the science of how we collect, manage, analyse and use data to generate information and intelligence to improve peoples health. The insights generated can be used to support healthcare professionals, managers and commissioners to make the best-informed decisions for their patients. Well organised data is needed to ensure services are configured to make the best use of scarce resources, are located where they are most needed and designed for the people they serve. Data from patient records alongside genetic information can be used by researchers to improve our understanding of the mechanisms of diseases and how different individuals respond to treatments over time. Data helps to identify new treatments and drug targets so that patients receive the best treatments for them, faster. So how can we maximise the utility of data to enable collaboration and coordination among healthcare providers and researchers, whilst keeping data secure and protecting peoples privacy? Our health informatics team has specialist skills in providing secure data environments that support the ingest, storage and organisation of health and other sensitive data, so that subsets of data can then be provided to researchers within a secure cloud research environment alongside the tools to support analysis. This model enables data controllers to allow access to their data without sharing it maximising the utility of data and benefits for care delivery, research and innovation, whilst protecting peoples privacy. Improving prediction, prevention, participation and personalisation The East of England Secure Data Environment for research and development (SDE) is part of an interoperable NHS Research Secure Data Environment network to give approved researchers secure access to de-identified NHS healthcare data, for approved projects. In partnership with Cambridge University Hospitals NHS Foundation Trust, we worked with Cambridge University Health Partners (CUHP) to secure 10 million in funding over two and a half years to design, build and operate the SDE to leverage routinely collected health data to accelerate research and innovation. The East of England provides a large and varied set of health and care data, particularly genomics data, and has a stable population that is well suited to longitudinal analysis. The East of England SDE offers the opportunity to accelerate research to improve quality of life and reduce health inequalities for the people in the region by providing a streamlined user journey for researchers backed by exemplary patient and public involvement and engagement. By joining up data from across organisations and facilitating secure access for research and development, we can help support the advancement of life-changing innovations, understand the mechanism of diseases and deliver personalised medicine. An example use case for the East of England SDE is using health record data from several organisations to help develop a tool to predict the risk of readmission following hospitalisation for heart failure. The use case will demonstrate the potential of the cloud-based platform to help researchers develop tools that will improve health and care outcomes for patients. Our team continues to support this work by providing operational leadership, programme management and technical expertise (working alongside our build partner Kainos) to build the SDE and make it available for use. Were getting better at treating heart failure, but this is dependent on our ability to recognise it sooner, and to recognise the factors that put some individuals at a higher risk than others. We can then modify those risks to ensure that our services are treating people in the safest and most efficient way. Creating a tool to predict patients risk of readmission to hospital for heart failure is just one of the many different ways researchers can improve public health using the SDE. We need patient data to inform the treatments of the future. My research goal is to advance the prevention of multiple chronic diseases by harnessing population-wide health data. The health informatics team at Health Innovation East, working with the research governance team at CUH, are helping to surface data in the East of England SDE that wouldnt otherwise be available for research by working in partnership with NHS organisations from across the region. Collaborating with these dedicated and forwardsthinking teams is incredibly enjoyable and rewarding, enhancing both the quality and impact of our all our efforts. Dr Paul Cacciottolo, chief investigator and consultant cardiologist at Cambridge University Hospitals NHS Foundation Trust. Prof. Angela Wood, co-theme lead for the NIHR Cambridge BRC Data Science and population health theme and associate director and theme lead for structured data for British Heart Foundation (BHF) Data Science Centre. Enabling smoother data sharing across organisations We support CYNAPSE a project led by Professor Serena Nik-Zainal at the University of Cambridge to build a common data architecture so that genomics and other biological data may be shared effectively and safely, initially across the NIHR Cambridge Biomedical Research Centre (BRC). CYNAPSE is becoming part of the BRC research infrastructure, providing a standardised system for researchers to store, process and access data so that information can be shared and used more efficiently. The platform aims to provide more researchers, including research groups that do not have access to large computational 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 BRC. Did you know? The CYNAPSE team (NIHR Cambridge BRC, Lifebit, and Health Innovation East) worked with Genomics England to demonstrate the first federated analysis of genomic data between a national programme and a higher education institution in the UK, the DARE UK Innovation Exemplar project (1). resources, access to specialist resources. The CYNAPSE team are working with Lifebit, who provide the software platform and cloud-based Trusted Research Environment (Lifebit CloudOS). A key feature of the platform is its potential to enable different research environments to talk to each other to facilitate analysis of genomic data across separate databases as if they were one, a process known as federation. Data federation builds a bridge between research environments to enable researchers to leave very large datasets in situ and analyse them remotely, while ensuring peoples privacy is protected, pulling only the results and not the original data into a secure and trusted research environment. Throughout the past year we have worked with the BRC to extend the CYNAPSE platform to support more research, while also working with health and care providers to embed a common data model to enable a more uniform analysis across different datasets in England and internationally. Working this way will help researchers to better understand global data trends, facilitate international working on research projects and improve the interoperability of health data. Whats coming in 2024-25? Full blood counts (FBC) are the most common medical laboratory test performed an BloodCounts! is an international consortium of scientists led by Professor Carola-Bibiane Schnlieb and Dr Nicholas Gleadall from the University of Cambridge. estimated 3.6 billion times per year worldwide (2). Despite being a routine test, full blood counts hold rich data that can predict infectious disease outbreaks and support earlier diagnosis of non-infectious conditions. BloodCounts! aims to use anonymised data from routine blood tests and powerful AI-based techniques to provide an early warning system for novel disease outbreaks. Unlike many other detection In 2021, just after the pandemic, the BloodCounts! team developed machine learning methods based on this idea and showed that the technology would have been able to detect a COVID-19 outbreak in Cambridge (3). methods, BloodCounts! requires no prior knowledge of a specific Read here pathogen but scans the FBC for signs that our immune Each year, an estimated 3.6 billion full blood count tests are performed worldwide (2). system has detected a pathogen. As part of a programme of work supporting CUHPs data strategy, our health informatics team is now supporting Dr Gleadall and the BloodCounts! consortium by helping to set up and configure a High-Performance Computing environment (HPC) for artificial intelligence and machine learning on the University of Cambridges Secure Research Computing Platform (SRCP). Share this article Return to About Us References We provide programme management and operations, data management and service delivery for health informatics projects, as well as bioinformatics support. If you want to learn more about our work in health data research and informatics please contact us at healthinformatics@healthinnovationeast.co.uk or visit our website Up next: Read how we help demonstrate impact with real-world evidence to inform the adoption and spread of innovation. 1 Multi-party trusted research environment federation. Funded by UK Research & Innovation as part of Phase 1 of the DARE UK (Data and Analytics Research Environments UK) programme. Ref: zenodo.org/records/7085536 2 BloodCounts!. (2023). [Online]. Available at: www.bloodcounts.org [Accessed 20 April 2024]. 3 Kreutner, D. (2021). SARS-Cov-2. [Online]. www.bloodcounts.org. Last Updated: 2021. Available at: www.bloodcounts.org/themes/sars-cov-2 [Accessed 21 May 2024].