Since launching in October 2019, PIONEER as one of seven Health Data Research Hubs has demonstrated that our 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 being heavily involved in the UK’s response to the COVID-19 pandemic, supporting 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 halfway through their three year funding period in March 2021, where they were required to demonstrate their successes so far. After a rigorous process, 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’ unique 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 structures to Hub decisions and ensure patient and public ideas and concerns are heard.
Over 100 cross-sector partners involved across the seven Hubs, delivering over 300 projects so far since their launch in 2019 and making 157 datasets available for vital research via the Innovation Gateway. Hub data is being used by NHS, public health, academic and industry researchers.
The seven Hubs have made a significant impact in the UK response to the pandemic. As the virus swept the nation, PIONEER led 12 projects across NHS, academia and industry, including designing and implementing a fully-electronic screening and management system and real-time Covid-19 dashboard. This dashboard provided a fast-track screening tool for nationally-prioritised clinical trials, supporting >10,000 recruitments for the NIHR Clinical Research Network.
We also identified the increased risk of venous thromboembolism – blood clots in the veins – with Covid, and helped adapt treatment pathways to prevent them – which have been shared with over 60 hospitals worldwide to date.
The seven Hubs specialise in distinct areas of health data science:
- PIONEER allows innovative healthcare companies to develop, test and deliver advances in acute care.
- 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 works with data from the NHS in London and Manchester, with appropriate controls and consent, to support research to find new ways to diagnose and treat disease and make care for patients better and safer.
- 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.
“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.”
“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.
To find out more about the work of the seven Health Data Research Hubs, read our full impact report or watch our video below.
