Health Data Research UK (HDR UK), the national institute for health data science, has released its annual review, which shares data insights and an overview of its work during the COVID-19 pandemic.
The report for 2020/2021, entitled ‘Data Insights in a Pandemic’, explains the organisation’s strategy, approach, and its projects and highlights across the year, as well as platforming case studies from the past 12 months.
Setting out its stall, HDR UK explains that its mission is to “unite the UK’s health and care data to enable discoveries that improve people’s lives” and that its 20-year mission is “for large scale data and advanced analytics to benefit every patient interaction, clinical trial, biomedical discovery and enhance public health”.
To achieve the 20-year aim, the annual review also details the organisation’s strategy, which involves: uniting health data through the UK Health Data Research Alliance and Innovation Gateway; using open standards to earn the trust of the public; providing tools, methods, hubs, and national expertise to improve the quality of health data; enabling research and innovation, and ‘demonstrating novel approaches to health data use’ and ‘impact at scale’; establishing the ‘next generation’ of research leaders in health data science; and an ‘inclusive, team-oriented ethos’.
Some of the ‘highlights of the year’ included, but were not limited to:
- April 2020 – a team from DATA-CAN, the Health Data Research Hub for Cancer, and others, working with Alvina Lai and University College London researchers to highlight the risk of extra deaths in people with cancer due to the COVID-19 pandemic.
- May 2020 – initiation of work to promote the use of Trusted Research Environments for secure use of health data.
- June 2020 – in the RECOVERY Trial, a HDR UK Research Director found that dexamethasone ‘reduces death by up to one third in hospitalised patients with severe respiratory complications of COVID-19’ with data via the NHS DigiTrials Health Data Research Hub.
- June 2020 – the International COVID-19 Data Research Alliance (ICODA) was launched.
- October 2020 – the first students joined the Wellcome PhD programme in health data science, in partnership with the Alan Turing Institute.
- December 2020 – HDR UK and 20 partners announced an internship programme for Black health data scientists.
- February 2021 – HDR UK says what is ‘the world’s first real world data on single dose vaccine effectiveness’ was published by the EAVE II study and BREATHE Health Data Research Hub.
- February 2021 – a new, linked health data resource which covers 54.4 million people in England was made available for research through the BHF Data Science Centre led by Professor Cathie Sudlow, its Director.
- March 2021 – the first nationwide COVID-19 vaccine datasets were made available to researchers on the Health Data Research Innovation Gateway.
HDR UK had “over 22,000 patients and public contributors involved in health data research” across the last year, and also produced 30 reports for the UK Government’s Scientific Advisory Group for Emergencies (SAGE) on datasets, recommendations for research projects and data insights – all of which can be found on HDR UK’s website.
Notable case studies during the year included:
- Patient and Public Involvement and Engagement – over 800 patients, carers, members of the public and practitioners took part in a two-week consultation to ‘prioritise health data research questions on COVID-19 vaccines’; the organisation also designed a rapid survey for AstraZeneca on public clinical trial participation. This found, from 106 responses, that people would rather be contacted by researchers or GPs than representatives from Test and Trace, that potential participants wanted reassurance that patient data is only used for research and increased understanding of the role of AstraZeneca, as well as assurance that the organisation would not access or profit from patient data and more detail on the trial and potential side effects.
- The PRINCIPLE Trial – the trial aimed to to discover COVID-19 treatments for over 50s at high risk of complications, which could be taken at home and prevent hospital visits. By early October 2020, it had 1,630 eligible participants but the pandemic created barriers to recruitment. HDR UK then utilised linked datasets to ‘identify people with a positive COVID-19 test within 24 hours from the UK’s NHS Test and Trace system and Summary Care Record data’, accelerating recruitment to 4,671 patients by 31 March 2021.
- Mapping COVID-19 across neighbourhoods in real-time – a team consisting of many HDR UK researchers, wanted to ‘help understand the localised spread of COVID-19’. The study adopted ‘sophisticated geo-spatial modelling methods’ to ‘estimate near-real-time prevalence of infections at small-area resolution using data from the “Zoe” COVID-19 Symptom Study app’. The maps generated provide the ‘first fine-scale, UK-wide assessment of the geographical distribution of probable COVID-19 infections’ and the system combines real-time data sources and rapid analytical tools to give predictions.
Caroline Cake, the CEO of HDR UK, and Andrew Morris, the organisation’s Director, said: “This review of 2020/21 acknowledges and celebrates the hard work and commitment of health data scientists across the UK. It also looks ahead to the potential benefits that data science can make across all areas of health and care, building on the insights from the pandemic.
“These benefits will be realised through demonstrating trustworthiness, and partnership working across the NHS, academia, charities, industry and government.
“The far-reaching impact of health data research is evidenced in over 2,000 published research papers and over 150 resources openly available on Github involving members of the HDR UK research community, many of which provide crucial insights into COVID-19.
“We are accelerating reproducible science by bringing together repositories of open standards, data and source code, tackling some of the most important challenges in wrangling multimodel data and generating replicable insights. The power of this “Team Science” approach is celebrated through our open events, virtually attended by 1000s of people, which showcase this research and catalyse further collaboration.”
As to what lies ahead, they added: “As we look forward to the coming year, there will be a renewed focus on our purpose and strategy as we prepare for our next quinquennium that starts in April 2023. We are committed to working with our partners and community, strengthening our connections and promoting nationwide and international collaboration for public benefit.”
To find out more about the year’s data research case studies from HDR UK, or read about its plans for the future, click here.
HTN also recently caught up with Professor Cathie Sudlow, of the BHF Data Science Centre, to discuss population health research and linked datasets. The full interview can be found here.