Centre for Health service and Academic Partnership in Translational eHealth Research (CHAPTER)

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.

UCL Partners is the largest AHSC in terms of population served (5m, ethnically diverse), and concentration of BRCs (n=5, £165m) and is the only AHSC with a system wide partnership model (n=14 NHS Trusts). 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 translational research. With UCL as host institution committing £4m to CHAPTER, and NHS partners investing significantly in new integration systems (across primary and secondary care), we will deliver impact across the whole translational cycle from biological discovery including omics and digital phenotyping with 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. These will link and exploit both UCLP primary and secondary care datasets and our national collections with >1m patients in cardiovascular (UCL, NICOR), mother and child and infection (HPA, LabBase).
B establish a new integrated informatics and biostatistics platform to underpin translational research.
C establish an Academy of Translational eHealth for inter-disciplinary training of clinicians, academics and those in enabling roles.
D implement consent as part of care across UCL Partner organisations and develop innovative public engagement programmes.

These four areas of work will provide launch pads for programme grant applications for further research for patient benefit as well as laying the foundation for extending CHAPTER research into neurodegeneration and other areas of BRC funding.

CHAPTER research will have positive impacts for four major groups of non-academic beneficiaries (the Academic beneficiaries are described separately).

1. Patient and public health benefit: The overarching rationale for CHAPTER is to deliver benefit to individuals with, or at risk of, major clinical conditions and thereby to have a beneficial impact on the health of the public. We expect the earliest benefits to be apparent in the initial CHAPTER research programmes: cardiovascular disease, mother and child health, and infection, with later benefits in subsequent research programmes such as cancer and neurodevelopmental disorders.
Health of the public at international, national and local levels: CHAPTER electronic health record research will deliver new knowledge to inform public health policy building on our previous examples (e.g. safety of measles, mumps and rubella vaccination, Smeeth et al, Lancet). CHAPTER will develop new tools for surveillance, screening, and primary and secondary prevention of communicable and non-communicable disease and health related conditions. Enhanced effectiveness of public services and health policy in this way will ultimately benefit the general public. For example, with HPA we will develop real time (and partially automated) analyses of health record data for rapid response to communicable disease threats to public health. Building on our experience of record linkage between health and social domains (e.g. childhood health and educational attainment (Brocklehurst)), we can inform the rapidly expanding study of the social determinants of health and its policy implications.
Individual patient benefit: CHAPTER will deliver direct benefits to patients by
- Involving patients in their own clinical care, through personal health records (e.g in maternal and child health), and joint clinician-patient decision support tools.
- Expanding opportunities to participate in phase 2 and phase 3 randomised trials. By allowing trials to be carried out more rapidly and at lower cost, CHAPTER will help accelerate the pathway of novel, therapeutic interventions, through evaluative stages into clinical care.
- Improving the quality and safety of clinical care provided in primary and secondary care settings, through interrogation of electronic health records, linked to patient reported outcomes (PROMS) (e.g. in the national joint registry), and clinical events. This builds on existing quality improvement initiatives for example in the national registry of acute coronary syndromes, MINAP, which have demonstrated improved use of secondary prevention medication and lowering of 30 day mortality.
We are confident that our innovative model of public engagement and the PE activities embedded throughout CHAPTER will result in patients and the public having substantially more involvement in research designed to improve their health care.

2. The improvements in health care described above come about because of decisions taken by health policy makers, commissioners and provider organisations and clinicians - each of which are non-academic beneficiaries of CHAPTER research. At the heart of CHAPTER lies the partnership between NHS (acute and primary) organisations with the university, and UCLP is strongly placed to capitalise on this partnership.

3. Benefits to non-academics in enabling roles: The CHAPTER Academy will develop new career opportunities for those in data management, NHS IT and other roles which are essential to delivering CHAPTER aims, but which have fallen outwith conventional career pathways.

4. Industry benefits from CHAPTER outputs, will attract R&D investment to UK organisations, not only among partners in the drug, device, biomarker discovery industry (for example with more efficient trial programmes), but also, using the resources and methodologies developed in CHAPTER, in the IT vendor / informatics industry (see Pathways to Impact).