Since launching in October 2019, seven Health Data Research Hubs have demonstrated that their uniquely collaborative, cross-sector and fast-paced method of working delivers results that make a difference to patients’ lives. Led by Health Data Research UK (HDR UK), in the past year the Hubs have also pivoted to support the UK’s response to the COVID-19 pandemic, enabling research in areas such as infection rates, vaccine rollout, and understanding the impact of COVID-19 on specific disease areas.
The Hubs reached the second milestone assessment 18 months after launching in March 2021, where they were required to demonstrate their impact so far. After a rigorous process involving an independent panel, all seven Hubs passed the assessment, each demonstrating clear evidence that they had made significant impact on health data science in the UK. The Hubs have developed unique models of partnership and collaboration that bring together datasets and make them available to academic and industry groups wishing to conduct research in a trustworthy way.
The Hubs’ Approach
The Hubs’ approach includes putting patient and public involvement and engagement (PPIE) at the heart of their work. Over the past 18 months, the Hubs have delivered over 20,000 meaningful patient interactions, and have PPIE embedded in their governance, decision making and ensure patient and public ideas and concerns are heard.
Over 100 cross-sector partners are involved across the seven Hubs, which have delivered over 300 projects so far since their launch in 2019 and made 157 datasets available for vital research via the Health Data Research Innovation Gateway. Hub data is being used by NHS, public health, academic and industry researchers. For example, Dr Foster, a leading data analytics SME and Discover-NOW partner, is building COVID-19 risk models to identify risk factors of death and a long length of stay in COVID patients, and the data from Discover-NOW is being used to inform national benchmarks for NHS trusts to better understand their performance in order to improve patient care and outcomes.
The Impact of the Seven Hubs
The seven Hubs have made a significant impact in the UK response to the pandemic. BREATHE has supported the rapid set-up of the EAVE II study, which linked patient data across the entire Scottish population, providing the first real-world evidence of the success of the vaccination programme. In addition, NHS DigiTrials has supported the RECOVERY Trial, which has enrolled over nearly 40,000 patients so far to assess the efficacy of treatments for COVID-19. In addition, over the course of the UK lockdown in 2020, DATA-CAN and UCL collected and analysed ‘real-time’ data from UK cancer centres, covering over 3.5 million people. This data provided a valuable insight into the effects of the COVID-19 pandemic on cancer patients and services and contributed to the decision to restore cancer services.
Full details of the work the Hubs have achieved so far is available via HDR UK’s report: Improving Health Data: Impacts from Health Data Research Hubs. With a further eighteen months of funding across the programme, the Hubs will continue to support health data research in the UK and beyond.
“It is fantastic to see the impact the Hubs are already having, both for patients and for the life sciences industry in the UK,” commented Ben Gordon, Executive Director for Hubs and Data Improvement at Health Data Research UK, “and it’s a testament to the unique approach the Hubs have taken, as cross-sector consortia working at pace, with patient and public involvement at their core.”
Specialisations of the Seven Hubs
The seven Hubs specialise in distinct areas of health data science:
- BREATHE is enabling the use of respiratory health data in cutting-edge research and innovation, to address conditions such as asthma and COPD.
- DATA-CAN is a UK-wide partnership that aims to unlock the power of health data to improve cancer care.
- Discover-NOW supports access to one of the largest depersonalised linked health data sets in Europe harnessing Real World Evidence to revolutionise the way health data is used for research into treating and preventing disease.
- Gut Reaction harnesses the power of health data to help identify the best treatment for each person with Crohn’s Disease or Ulcerative Colitis. Working with patients, academia and industry, it will unite high-quality health data sets from trusted partners and support their use for research.
- INSIGHT is focused on eye disease and its application to wider health, including diabetes and dementia. It will use anonymised large-scale data and advanced analytics, including artificial intelligence, to develop new insights in disease detection, diagnosis, treatments and personalised healthcare.
- NHS DigiTrials focuses on the development of a foundation service to improve the assessment of clinical trial feasibility – supporting improved planning and delivery of clinical trials in the UK
- PIONEER allows innovative healthcare companies to develop, test and deliver advances in clinical care.
“The Hubs have demonstrated real impact from their work to involve patients and the public, including in decision making; raising awareness and increasing participation; improving transparency, understanding and accessibility for members of the public. Our hope is that they will build on this early work and that patient and public involvement and engagement will remain embedded in everything they do.” Sarah Brooke, patient and public representative
“The Hub’s role as a facilitator between the NHS, academia and industry partners to provide a level playing field and a safe environment to experiment is critical to the success of innovative and transformational work.” Ross Stone, Global Programme Director, Healthcare, AstraZeneca
HDR UK plans to build on the existing Hubs’ successes, and will be expanding the Hub network with two new Hubs focusing on Pain and Mental Health in the near future.
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