Welcome to the Health Data Research UK 2018/19 Annual Review.
Health Data Research UK is the national institute for health data science. Our mission is to unite the UK’s health data to enable discoveries that improve people’s lives. The UK has some of the most comprehensive data sources internationally, from NHS data, to clinical trials, world-leading cohort studies and social, molecular and environmental data. Our ambition is to revolutionise research and innovation in the UK by working in partnership to enable linkage, access and analysis of these health data at scale to facilitate better health outcomes.
Since our establishment in April 2018, we have been laying the groundwork through our ‘One Institute’ strategy to transform the UK’s health data research landscape and help address the challenges to human health. Over the next 12 months we are set to build upon this foundation as we deliver scientific advances, support the careers of data scientists, and make important steps towards building a UK-wide infrastructure that will transform data access, and embed public engagement across all stages of the innovation process.
This report highlights team science at scale. We have made enormous progress as an Institute and as a team in our first full year and I would like to thank the staff of the Institute, of our partner universities, and of our NHS, industry, Government and third sector partners for the hard work that has brought about these achievements.
Professor Andrew Morris
Over the next 20 years, our vision is for every health and care interaction and research endeavour to be enhanced by access to large scale data and advanced analytics.
Empowering researchers with access to rich, large-scale data combined with new scientific insights will transform research and innovation and lead to better health outcomes through significant advancements in our understanding, prevention, diagnosis and treatment of disease.
To achieve this aspiration, we are bringing together the NHS, the public, industry and academia as one combined force. A collaboration of this scale has never been seen before. It will significantly transform the future of healthcare by developing and championing the best in science, people and infrastructure underpinned by earning public trust. Each of these elements has a crucial part to play in advancing healthcare improvements and will fuse together to create an unparalleled ecosystem for health data science and innovation to flourish.
We are One Institute, delivering our vision through:
Science – Stimulating world-leading scientific research and innovation by enabling new ways of extracting knowledge from complex and diverse health data and empowering the community of NHS, academic, industry and other healthcare innovators to harness its potential.
People – Inspiring the next generation of health data scientists with training, opportunities and funding to empower people to lead the data science revolution.
Infrastructure – Creating a world-leading data infrastructure and UK-wide approach to secure data services to accelerate scientific research and digital innovation.
Public Engagement – Earning the confidence and trust of patients and the public in using health data for research and innovation.
Through our University and NHS partners, Health Data Research UK has access to some of the UK’s brightest minds in biomedical and clinical science, maths, statistics, computing, ethics and social sciences.
This provides a foundation of expertise that has a track record of developing and applying cutting-edge health data science approaches to clinical, biological, genomic and other types of diverse health data. This is stimulating world-leading scientific research, clinical trials, public health and digital health insights that will forge discovery of new diseases, increase clinical trial participation, develop the best treatments, and eliminate the most devastating diseases.
In 2018/19 we:
Dr Moritz Gerstung leads a research group at the European Bioinfomatics Institute (EMBL-EBI), one of HDR UK’s research partners, investigating the underlying mechanisms of cancer development and seeking to understand the differences in therapy success and outcomes in different individuals. His recent study into acute myeloid leukaemia (AML) found genetic precursor cells up to ten years prior to diagnosis. This indicates that, although the disease usually manifests without prior symptoms, there is a slow build up, which raises hopes for new avenues of early detection and prevention.
"It’s great that at HDR UK, we are facilitating access to existing cohorts across the UK and linking data between molecular cohorts and health datasets. Our study underscores the value of establishing research cohorts, providing samples, materials and data that can be tapped into by different researchers."
A five-year research project led by Dr Robert Aldridge at the Institute of Health Informatics involved the analysis of medical records for nearly 4,000 homeless people, 600 of whom subsequently died after an admission to an English hospital. Contrary to popular perception that homeless people are most likely to die from hypothermia or alcohol and drug overdoses, the majority of the deaths were from treatable conditions such as cancer, stroke and cardiovascular disease.
"HDR UK was established at the right time as we are aiming to ensure that this research is not a one-off study, but that we use it as the basis for further work that will continue to monitor the situation across the UK. It is important that we review the health and wellbeing of our homeless population on an ongoing basis, to see if it changes or worsens, and how we can prevent this."
More than three-quarters of a million people globally take their own lives every year, to devastating personal, social and economic cost. Whilst past research has shown the link between suicide and mental health and environmental and biological causes, a team at the University of Glasgow, part of HDR UK, has now identified specific DNA risk markers involved.
"The long-term ambition is for researchers in genetics to work more closely with social and psychological scientists to develop useful models of suicidal behaviour that are informed by evidence from biological, social, psychological and medical research. Building these networks and having greater access to datasets is made possible by HDR UK and helps us to create a more united research environment."
Professor Lindgren’s research at the Big Data Institute (BDI), University of Oxford, seeks to advance understanding of the underlying mechanisms involved in obesity. By applying a range of genetic and genomic approaches, her team looks to identify genetic variants influencing fat distribution around the body, and to illuminate the biological pathways involved. She recently led one of the largest studies to explore the influence of low frequency and rare coding variation in body-fat distribution and found that these variants are rarer in the population, but the effects on individuals are usually larger.
"My science wouldn’t happen without collaboration – I work with many organisations, institutes and consortia, accessing, linking up and analysing different data types. This is why I am so excited about HDR UK and what we stand for – we are connecting the right people and ensuring we stay at the forefront of scientific research. "
Delivering our ambitious vision and world-leading health data science requires a community of scientists with new skills that will strengthen medical research and open up faster, smarter pathways to patient care. Our training strategy focuses on the three fields needed to create a diverse cohort of future pioneers: statistics, informatics and health science.
Our five-year ambition is to develop 10,000 health data scientists spanning all career stages, from school leaver to senior research manager and international opinion leaders. This year we have been laying the foundations to achieve this through launching a competition for master’s level programmes, gathering information on health data science training activities, and creating a research fellowship.
In 2018/19 we:
Dr Hassan was selected as an HDR UK Fellow to support and build her expertise in health data science. Based at the University of Manchester, she leads digital health research across a range of health informatics projects. Dr Hassan’s HDR UK funded project will test new ways of applying natural language processing methods to analyse social media data to assess public opinion on health and care using a mixed methods approach.
"The Fellowship has been a brilliant opportunity for me to change track in my career; it’s opened doors and is providing me with skills and training needed to navigate technical and ethical challenges to further my research into patient experience."
We are improving access to health data by creating rich, robust, reliable and scalable infrastructure. This is underpinned with a strong governance framework and clear leadership with a focus on public engagement. Our aim is to enable researchers and innovators to access data and develop valuable insights that will enhance our understanding of disease and ultimately improve people’s health.
In 2018/19 we:
The UK Government, through the UKRI Industrial Strategy Challenge Fund, commissioned Health Data Research UK to deliver its £37.5m Digital Innovation Hub (DIH) Programme with the aim of making the UK home to data-driven research, scientific advances and innovation in healthcare to improve patient outcomes. This will be achieved by creating a world-leading nationwide data infrastructure that supports access to multi-dimensional datasets on common diseases, clinical trials capability and large-scale real-world evidence. Our dialogue phase between September 2018 and April 2019, led to the design of three elements of the Programme: the UK Health Data Research Alliance, Digital Innovation Hubs and the Health Data Research Innovation Gateway.
"Over the last 12 months we have focussed on prototyping activity working with organisations including NHS Digital, universities, and industry. The aim was to look at interoperability and metadata management, breaking across silos to develop joined-up approaches."
In January 2019, we selected ten projects to provide innovative data solutions to healthcare challenges, to show how technology and data solutions can speed up innovation in the NHS and life sciences sectors. Each project is receiving a share of £3 million funding from the Industrial Strategy Challenge Fund and is being delivered by academic, NHS and industry consortia, to provide ‘proof of concept’ of potential technology solutions.
These projects support the Digital Innovation Hub Programme by providing insights into current market and idea generation, sharing early lessons with the wider programme and building a community. This is the first step to creating Digital Innovation Hubs and the Gateway across the UK to securely and safely connect data from the NHS with genomic data and other molecular data for research.
Among the selected innovations is a project led by University of Leicester and aims to develop a regional network of linked de-identified datasets of GP, hospital and research records that protects patient privacy and confidentiality and tests how this approach could work nationally.
This Sprint Innovation Exemplar Project – called MyEyeSite – is one of ten projects funded as part of the Digital Innovation Hub Programme by the Industrial Strategy Challenge Fund. It aims to support patients with rare eye diseases with new, accessible technology and to facilitate research. It is led by Professor Andrew Webster, Consultant Ophthalmic Surgeon, Moorfields Eye Hospital NHS Foundation Trust.
MyEyeSite will develop a prototype technology solution that will enable patients to look after their own data and share this with the clinicians they interact with. The team includes clinicians and researchers from Moorfields Eye Hospital and the UCL Institute of Ophthalmology, with a software development company, Loft Digital, working in parallel with patients to optimise the platform according to their needs.
"Getting our project up and running has only been possible with this funding and HDR UK’s support. The idea of creating a data technology service that would empower our patients has been a solution we have wanted to develop for some time – being involved in the Sprint Exemplar process has really enabled us to get this going and we’re excited about the potential results. "
In July 2018, the Health Informatics Team at Swansea University, led by Simon Ellwood-Thompson, was awarded capital funding by HDR UK to develop, update and secure the future of the UK Secure eResearch Platform (UKSeRP). UKSeRP is based in Swansea and hosts health data and provides a safe environment for data and tools for collaborative research programmes involving researchers from all over the world.
This service is exciting because it is already enabling researchers to focus on answering their questions and to generate new knowledge about diseases and their treatments. The developments will be a step change in our ability to run health research programmes quickly, efficiently and will ultimately improve people’s lives.
"Our ambition is to enable health data research at scale by providing the tools and data to answer the most challenging research questions"
Achieving the confidence and trust of patients and members of the public in the use of health data for research and innovation is critical to achieving our vision. It is therefore crucial to actively engage the public at an early stage to help shape our strategy, research and every stage of the innovation process. Our One Institute strategy outlines our commitment to engaging and involving patients and the public and guides our commitment to acting in their best interests and with their backing.
In 2018/19 we:
Ben is a former local Councillor and charity trustee and he is passionate about community engagement. He is a member of HDR UK's Public Advisory Board, which formed in January 2019 following a competitive recruitment process.
We are here to provide advice on the delivery of HDR UK’s mission, principles and future strategy, with particular emphasis on ensuring that health data is used responsibly for research and innovation. We offer guidance on programmes of work and ensure that HDR UK’s work is focused on improving patient and population health outcomes.
We all feel strongly that whilst it is important that the public is educated on the use of their data for research, we want more co-production with the public. We believe you get better research when it is done in conjunction with those that are living with the diseases and conditions you are studying, and whose data you are analysing.
"We have an exciting opportunity to transform research by taking a UK-wide approach, to create more powerful studies, and ensure that everyone benefits"
HDR UK is a new type of institute; we’re bringing together the NHS, UK Government, industry and academia, as one combined force. Team science at this scale will significantly transform the future of healthcare by enabling and championing the best in science, people and infrastructure. Each of these elements has a crucial part to play in advancing healthcare improvements and will fuse together to create an unparalleled ecosystem for health data science to flourish.
In 2018/19 we:
Our mission is to unite the UK’s health data to enable discoveries that improve people’s lives. To achieve this, we are working in partnership with organisations so that we can deliver more together. Through partnership, we are identifying and acting on opportunities to make bigger and better health data science improvements and best use of public money, by sharing expertise, combining financial resources, aligning engagement and providing clarity to end users. During the year, we created strategic partnerships with organisations that add value to our four priorities of science, talent, infrastructure and public engagement, with core partners including NHS Digital, the British Heart Foundation, KQ Labs, The Alan Turing Institute and the UK Health Data Research Alliance.
"In the UK, we are fortunate to have some of the world’s greatest data assets, skills and expertise across our institutes, universities, industry and healthcare organisations. Working together in partnership allows us to develop a stronger UK proposition on an international level, which benefits us all."
Health Data Research UK’s funders recognise the pivotal contribution of health data science to achieve transformative health benefits and the UK’s ambition to be a leader in life sciences.
Our founding funders have jointly invested in Health Data Research UK over the next five years.
Our funds support long-term scientific and research studies, training and infrastructure that contribute to data science at scale, support our One Institute approach and deliver long-term impact on the health of patients and populations across the UK. We also raise thematic funding to support specific programmes of work.
Health Data Research UK’s Board members bring exceptional and diverse skills and expertise to support us in the delivery of our mission.
The Board of Health Data Research UK is responsible for the effective governance and development of the Institute, supports the Director in overseeing the delivery of our strategy, monitors key risks, and ensures resources are managed effectively.
Health Data Research UK is the National Institute for health data science. We are funded by the Medical Research Council (MRC); the health research departments of England, Scotland, Wales and Northern Ireland (National Institute for Health Research (NIHR), Chief Scientist Office (CSO), Health and Care Research Wales, HSC Research and Development respectively), the Economic and Social Research Council (ESRC), the Engineering and Physical Sciences Research Council (EPSRC), Wellcome, The British Heart Foundation and UK Research and Innovation.