As the national institute for health data research, the Health Data Research UK (HDR UK) community is actively championing the use of health data to address the COVID-19 challenge. It has been incredible and, actually quite moving, to see our Institute members across the UK uniting and collaborating at scale, to play their part in contributing to this global challenge.
Institutions, which might otherwise be competing against each other, are collaborating, willingly enabling access to data, tools, analysis and insights and forming teams that have already started deploying their skills, experience and resources into research and innovation to combat COVID-19. For example, identifying which medicines and clinical practices have the best outcomes for patients with COVID-19.
Such is the scale and immediacy of this global challenge, that we have developed a rapid, collaborative and agile strategic response to make best use of our national reach, through three priorities.
Accelerating safe access to UK-wide health data relevant to COVID-19
We are accelerating safe access to health information for researchers and innovators, so they can get on with understanding how this virus works, developing treatments and vaccines, and generating evidence to help guide public health policy. This vital work, which could save thousands of lives, is being hampered by the lack of a streamlined process for safely and securely gaining access to health data of patients who have tested positive for COVID-19. This is not a new challenge for HDR UK, in fact it is the reason we were set up nearly two years ago, albeit COVID-19 probably didn’t even exist at that point. We have been working towards accelerating safe access to health data because it paves the way for research that saves and enhances the lives of patients living with all sorts of conditions (e.g. heart disease, Parkinson’s, auto immune conditions), as well as for maintaining the wellbeing of healthy members of the public.
This research requires access to NHS Electronic Health Records so that researchers and innovators can analyse the patterns in the data and make recommendations. This data includes details of the hospital at which patients are being tested or treated, their symptoms, how quickly they recovered or otherwise, chest x-rays, which test was used to check for the virus, etc. Researchers and innovators need this information in real-time, or as near to that as possible, in order to maximise the benefits for patients. However, the information flows are often painfully slow – some taking weeks, months and even years to surface. Research saves lives, but only if rapid and safe access to health data from across the whole of the UK is enabled. That’s what HDR UK was set up to do. We could not have imagined we would be doing it to tackle a global pandemic – but we are taking on the challenge, working in partnership with the organisations that hold this data and playing a national coordination role to push this forward at an unprecedented rate to enable discoveries to tackle COVID-19. Our pre-existing work to develop a Gateway to the UK’s health data is being accelerated and broadened to beat COVID-19, with the support of the data custodians who form the UK’s Health Data Research Alliance.
Co-ordinate and connect national data science-driven research efforts related to COVID-19
There are a plethora of projects and activities going on under the HDR UK banner and beyond that address one aspect or another of the COVID-19 pandemic. Our members are all leaning in and considering how the health data research tools and methodologies that they have been working on for months or years can be modified to tackle this virus. These include:
- Nationwide clinical trial of all COVID-19 patients to develop a treatment A clinical trial, which aims to include all COVID-19 patients, has been set up in record time, to test three drugs against COVID-19, which have already been cleared for safe use in people. Such trials normally take months to set up, but this one has been set up in a matter of weeks, without cutting corners – purely as a result of all those involved expediting processes and working together. Patients who have tested positive for COVID-19 are beginning to be recruited into this trial from England, Wales and Scotland, with Northern Ireland to follow. The three medicines being tested are normally used to treat other conditions, but there is reason to believe that they may also be effective against COVID-19.
- “Tagging” COVID-19 patients consistently in health records As this is a new virus, the NHS did not have a “label” for doctors to use to indicate the diagnosis in a patient’s Electronic Health Record. That may sound like an inconsequential administrative consideration, however correctly labelling patients in hospital systems is core to enabling the data science that might lead to successful treatments and prevention measures. HDR UK projects are bringing together the “tags” used so far to describe COVID-19 in Electronic Health Records so that hospitals across the country describe the disease consistently. This will allow medical research on COVID-19 to be carried out across the whole of the UK, rather than just hospital by hospital. Research that uses large numbers of data points is more effective and accurate, so this is important. The team working on this includes Neil Sebire and Spiros Denaxas.
- Studying the COVID-19 virus itself Samples from COVID-19 patients’ nose swabs are being collected routinely and sent to labs for testing. Researchers and innovators are extracting the DNA from the virus itself in those samples and have designed tests to confirm COVID-19 or otherwise. HDR UK researcher, Ewan Harrison, is leading work to do more in-depth analysis of the virus DNA sequence, in conjunction with the Sanger Institute, which was instrumental in sequencing the first Human Genome. This work will help to understand the causes of disease and may reveal chinks in the virus’ armour that can be exploited to stop it in its tracks. This work is made possible by people like Phil Quinlan, who is leading on getting samples from patients in hospitals across the UK into Biobanks in the first place.
We are working to coordinate data science driven research efforts like these across the UK, and connect teams working on similar or complementary research and innovation, to avoid duplication and synergise efforts.
So far, over 300 researchers and innovators have joined our COVID-19-challenge Slack channel (a social media platform) to share their work and lend their support to one another. A subset of them are videoconferencing weekly to share latest progress and identify barriers to their work. HDR UK is forging partnerships across sectors (government, NHS, industry and academia) to remove these barriers and speed up the research and innovation that will save people’s lives.
Supporting vulnerable groups who will be hardest hit
The focus of many of our activities has completely switched to COVID-19, however we recognise the importance of sustaining activities in other disease areas, as people already living with diseases may be the worst hit by COVID-19. In October 2019, we established seven Health Data Research Hubs, which are collaborations between NHS, academic organisations, patients, charities and industry, that improve and drive the use of health data and offer services for research and innovation. The Hubs for respiratory disease (the BREATHE Hub), clinical trials (the DigiTrials Hub) and acute care (the PIONEER Hub) are largely channelling all their resources into COVID-19, as it is of utmost relevance to them. The other hubs are continuing their work to support and treat patients who have COVID-19 on top of their pre-existing condition. Additionally, our National Multimorbidity Project was specifically set up to support research relevant to people living with more than one medical condition, of high burden to patients and therefore will be looking specifically at those most vulnerable to the effects of COVID-19.
HDR UK’s mission and vision is integral to fighting COVID-19
HDR UK’s mission – to unite the UK’s health data to enable discoveries that improve people’s lives – is integral to the fight against COVID-19 and we remain dedicated to our vision and renewed in our enthusiasm to play our part in this public health emergency. These are unprecedented times and have led to an unprecedented union of those engaged in research and innovation – across institutions, sectors, UK regions and disciplines – which will lead to progress in how we engage this disease. This is a shining silver lining to an otherwise devastating period of time. We should take a moment to commend and celebrate these teams, and allow our sprits to be lifted at the prospect of what impact such a united national research and innovation force could have on COVID-19.
If you would like to get involved in HDR UK data driven research and innovation against COVID-19, then please get in touch – email us at firstname.lastname@example.org