A consortium of five million patients, fourteen NHS trusts, and three universities is building a shared digital nervous system for UK healthcare research. The problem is that patient data is locked inside incompatible systems—GP records, hospital notes, disease registries, and imaging archives all speak different languages. This fragmentation makes it slow and expensive to answer even basic questions about which treatments work, for whom, and at what cost. CHAPTER will create a common informatics platform that securely integrates these data sources, then trains a new generation of researchers to use it. If successful, this infrastructure could transform how the NHS learns from its own practice. Clinicians might see real-time dashboards showing whether their prescribing matches best evidence. Researchers could link genomic data from a biobank to hospital outcomes for millions of patients, without months of data-wrangling. Public health teams could spot emerging infection patterns across primary and secondary care in days rather than years. The project also embeds patient consent and public engagement directly into clinical care, so the system is built with, not just for, the people whose data powers it.
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CHAPTER's host institution, UCL, is part of an established Academic Health Science Centre (AHSC), which brings together university and NHS organisations. This partnership lies at heart of the vision of CHAPTER. UCL Partners is the only AHSC with a system wide partnership model (n=14 NHS Trusts), and is responsible for the primary, secondary and tertiary care for a population of about 5 million people. UCLP hosts the largest concentration of Biomedical Research Centres (3 at UCL: UCLH, Great Ormond Street Children's Hospital and Moorfields Eye Hospital and two Biomedical Research Units (UCL: dementia; QMUL: cardiovascular). We will align our research with this significant (£165m) NIHR investment. Bringing together three of UCLP's academic partners (UCL, LSHTM and QMUL), and the HPA, CHAPTER will integrate for the first time multiple areas of critical mass (>60 data sources and >30 cross Faculty research groups with informatics expertise) in order to deliver our vision of driving the next generation of population wide research for patient benefit. With support from the MRC led funding consortium, UCL will commit a further £4m to CHAPTER, providing sustainable posts (2 Chairs, 2 senior lecturers, 2 lecturers) and associated costs. Our NHS partners are investing significantly in new integration systems (across primary and secondary care), to drive improvements in the quality and safety of clinical care and this will enhance our ability to deliver impact across the whole translational cycle: from biological discovery including genomics and medical imaging, through innovative trials to improving clinical practice, service delivery, patient outcomes and public health. Specifically CHAPTER will: A answer important research questions, aligned with our BRCs: initially in cardiovascular medicine, maternal and child health, and infection. We will work with the Clinical Practice Research Datalink (CPRD) and expand linkages within and between national primary care sources, and the national EHR resources that we curate with >1m patients, including the national disease and procedure registries in cardiovascular disease, (UCL, NICOR), mother and child, and infection (HPA, LabBase). B establish a new informatics platform (i.e. a common approach) ensuring that data collected in different clinical systems can be securely and meaningfully integrated for our research. We will improve the quality of clinically collected data, by linking to initiatives to improve the quality of clinical care. We will develop new approaches to tackle data which are missing in clinical records, analyse free text and medical images. Our visualization initiatives will support clinicians in decision making (e.g. dashboards), engage researchers in the complexity and meanings of data, and engage patients and public (citizen science). C establish an Academy of Translational eHealth for inter-disciplinary training of clinicians, academics and those in enabling roles. Bringing together the training capacity of LSHTM (epidemiology and biostatistics) and UCL (health informatics, range of translational sciences) we will establish a new, cross-discipline, doctoral training programme, taught courses (undergraduate, masters and short course), career development and leadership development programmes. D implement consent as part of clinical care across UCL Partner organisations and develop innovative public engagement programmes. We will engage patients in the design and evaluation of our UCLP-wide consent initiative and establish a continuous cycle of engagement with the public in the co-design of research using electronic health records. Research grants submitted from CHAPTER will be influenced from the start by such public engagement activities. These four areas of work will lead to programme grant applications for further research for patient benefit as well as laying the foundation for extending CHAPTER research into other BRC priority clinical areas.
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