Mapping the Landscape of UK Health Data Research & Innovation A snapshot of activity in 2017 Dr Ekaterini Blaveri October 2017 CONTENTS Foreword 5 1. Background to this review 7 1.1. Aims 8 1.2. Scope and sections 8 1.3. Approach 9 1.4. Challenges 10 1.5. Acknowledgements 10 2. Overview of major informatics investments by Funder 11 2.1. MRC 12 2.1.1. The Farr Institute of Health Informatics Research 12 2.1.2. MRC Medical Bioinformatics initiative 16 2.1.3. MRC Capital Investment in Genomics England Data Infrastructure 19 2.2.1. The NIHR Biomedical Research Centres 21 2.2.2. The NIHR Health Informatics Collaborative programme 22 2.2.3. The NIHR Collaboration for Leadership in Applied Health Research and Care 25 2.3. Department of Health and Social Care 26 2.3.1. Academic Health Science Centres 26 2.3.2. Genomics England | 100,000 Genomes Project 27 2.4. NHS 28 2.4.1. Academic Health Science Networks 28 2.4.2. NHS Genomic Medicine Centres 30 2.4.3. NHS Global Digital Exemplars 31 2.5. ESRC’s investments in Big Data 32 2.5.1. Administrative Data Research Network 32 2.6. EPSRC’s health data research investments 33 3. Key informatics investments by Research Organisation 35 England – East Anglia and Midlands 38 University of Cambridge 41 EMBL-European Bioinformatics Institute 48 Wellcome Sanger Institute 52 University of Birmingham 56 University of Leicester 62 University of Warwick 68 England – London 74 Imperial College London 76 King’s College London 85 London School of Hygiene and Tropical Medicine 94 Queen Mary University of London 98 University College London 103 Mapping the landscape ofMapping the UK Healththe Landscape and Biomedical of UK Health Informatics Data Research & Innovation 3 England – North 110 University of Leeds 112 University of Liverpool 118 University of Manchester 125 Newcastle University 133 University of Sheffield 141 England – South 147 University of Oxford 148 University of Bristol 156 University of Southampton 163 University of Surrey 170 Northern Ireland 176 Queen’s University Belfast 177 Scotland 182 University of Dundee 185 University of Edinburgh 191 University of Glasgow 199 Wales 204 Cardiff University 207 Swansea University 213 ANNEXES 221 Annex 1 222 Biomedical Research Centres research themes 222 Annex 2 226 Further information on ESRC investments in Big Data 226 Annex 3 228 List of abbreviations 228 4 BackgroundContents to this review FOREWORD Over the past decade, the Medical Research Council (MRC) and other major research funders have recognised the huge potential of health data research. Through careful and considerable investment, the funders have collectively built capacity in the sector; and enabled a dramatic change in the use of large patient data and research datasets to help understand, treat and prevent disease. The MRC has prioritised strategic support to this domain of activity, with key investments including: the Farr Institute of Health Informatics Research; MRC Medical Bioinformatics awards: contribution to Genomics England Ltd; and most recently, leading the establishment of the new national institute for health data science, Health Data Research UK (HDR UK). Together with funding from government, universities and charities, these investments have provided a significant step-change in the UK health data landscape across the spectrum, from molecules to man. However, many of these investments are at risk of operating in isolation from each other, with data, knowledge and methods tending to be developed in silos, particularly between the molecular and health informatic fields. Furthermore, the sector still has significant methodological challenges and digital skills shortages. As the volume and complexity of data continues to increase, it’s clear that we need to build on UK expertise, enhance our cutting edge analytical methods, and take a more coordinated approach to managing our unique data resources. Until now, there has been no UK overview of the health data research landscape. The report Mapping the Landscape of UK Health Data Research and Innovation gives a unique window into the major investments made across 26 research organisations throughout the UK. This report was prepared by the MRC to support the funders’ investment decisions into HDR UK. However, it also underscores the importance of health data research for the nation in general – and for science in particular – and will help funders develop a more coordinated and mutually beneficial approach, with an aligned set of delivery mechanisms for future investment. This is a transformational time for the health data research community, with significant activity across the world. The UK not only has a tremendous wealth and variety of health data but also a real strength in analytical skills. This report reveals that the UK has a very real opportunity to be a global leader in health data research and by harnessing this potential could yield huge benefits for our nation’s health and wealth. Dr R S Buckle Chief Science Officer, MRC Mapping the Landscape of UK Health Data Research & Innovation 5 6 Background to this review 1. BACKGROUND TO THIS REVIEW CHAPTER 1 BACKGROUND TO THIS REVIEW 1.1. Aims As part of the activities to establish Health Data Research UK (HDR UK) – previously known as the UK Health and Biomedical Informatics Research Institute – the MRC conducted a health data research and innovation landscape mapping review with the following aims: • To create a broad baseline of current activity in health data research relevant to health/biomedicine and innovation programmes; • To inform the next phase of investments in this area and in particular the new informatics institute (HDR UK), and other related activities, such as opportunities arising from the Life Sciences Industrial Strategy; • To compile qualitative insights that will help create a common understanding of the purpose, likely direction, and impacts of existing investments in health data research across different stakeholders that will result in strengthened partnerships and closer alignment of common objectives across existing and new initiatives; and • To present to the HDR UK Director, and the independent Expert Review Group (ERG), a body of knowledge to help them develop a comprehensive research strategy for HDR UK, including the selection of the research organisation sites that will constitute the institute. 1.2. Scope and sections Scope This review focuses on health data research and innovation investments and activities in the UK, and mainly in England due to the complexity and fragmentation across the breadth of activities in England. It was agreed with the sponsors of this review that if required, it could be broadened to include further investments (e.g. international), and/or deepened to include further analysis on specific investments at a future stage. Sections In its first section, the review provides a top-level view of some key informatics/health data science-related investments from several funders including the: • MRC: Farr Institute of Health Informatics Research; and Medical Bioinformatics awards • NIHR: Health Informatics Collaborative (HIC); and other informatics activities supported through the NIHR Biomedical Research Centres • Department of Health and Social Care England: Academic Health Science Centres • NHS England: Academic Health Science Network; and the National 100,000 Genomes Project • ESRC: Administrative Data Research Centres and Network; and other investments in Big Data • EPSRC: Alan Turing Institute and Health Data Analytics Network In its second section, the review provides an insight analysis of the confidential Statements of Interest (SoI) submitted from the different Research Organisations (ROs) in response to a targeted call issued in December 2016 to express their interest to become an HDR UK substantive or partner site. 8 Background to this review Out of scope This review does not include activities or investments on: • computational tools and platforms developed by the digital healthcare industry; • detailed description of data resources and population cohorts; and • information governance and data access processes and policies. 1.3. Approach The review staff (Dr Ekaterini Blaveri) used a combination of desk research and stakeholder communications to gain an understanding of the key UK programmes in health data research. Going forward the use of surveys, structured interviews; and workshop(s) with key opinion leaders could be considered to gain a deeper understanding of certain activities. It should be noted that the material searched could potentially be much more extensive, since aspects of research collaboration are referenced over a wide range of publications. However, because of the limited time available to this review, information was collated predominately from the funders of key programmes. Extracting insights from the Statements of Interest received from UK Research Organisations in response to the December 2016 call The MRC office received SoIs from 26 ROs interested in becoming a substantive site of HDR UK. These were subdivided into seven geographical clusters, to make easier to identify the regional strengths and interconnections. As the information requested from the ROs was very high-level, a modified “SWOT” analysis – (Strengths, Translational and Innovation Capabilities, Opportunities and Gaps – STOG) was performed to synthesise meaningful insights from the SoI and address the following questions: Strengths • What the organisation already does well? • What resources (both tangible and intangible)