Last updated May 17, 2020
Crucial new data on the health of 500,000 UK Biobank participants are being made available to scientists tackling the COVID-19 emergency.
The pioneering UK Biobank resource, which follows the health of 500,000 volunteers in England, Scotland and Wales, is well placed to help answer a wide range of questions about the pandemic, say researchers.
Results of COVID-19 tests for UK Biobank participants (both positive and negative test results) are provided by Public Health England (for participants resident in England). We plan to update these data on a weekly basis.
We plan to make the following data available on a monthly basis:
- GP (primary care) data provided directly by the system suppliers;
- Hospital inpatient data;
- Death data;
- Critical care data (for participants with confirmed COVID-19).
We plan to obtain these data from providers across England, Wales and Scotland, although our priority is to first make the data available for participants in England, as these comprise about 90% of the cohort.
A wide range of other data about health and lifestyle, including genetics, are already available for health research from UK Biobank. These additional data will:
- Allow the relevance of various genetic and non-genetic factors to severity and outcome to be assessed in different age groups;
- Provide a much clearer analysis of the prevalence and death rate in the UK;
- Allow for the assessment of the impact of different diseases on the outcome of COVID-19, as well as the impact of medications being taken at the time the disease develops;
- Provide more comprehensive information on the course of the disease.
The data will be available to researchers who have approval to use the UK Biobank resource and are undertaking health-related research in the public good. As always, the research will not identify UK Biobank participants.
More than 14,000 researchers worldwide are now registered with UK Biobank. Many of them, including leaders in genetics and drug development, are gearing up to use the data. UK Biobank expects scientists will apply themselves in all sorts of imaginative ways to tackle COVID-19.
UK Biobank is funded primarily by the UK’s Medical Research Council and the Wellcome science and health charity.
Sir Patrick Vallance, the government’s Chief Scientific Adviser, said there was a lot to learn about the natural history of the disease which the new data would allow. “It’s vital we learn as much as possible about the who, where and the when of the infection, both for the short and the longer term,” he said. “This new research will tell us about key risk factors and help us continue to manage the outbreak in an evidence-based way.”
Professor Martin Marshall, Chair of the Royal College of General Practitioners, supported provision of GP data to UK Biobank for COVID-19 research. “GPs and their teams are at the sharp end of this current crisis. This important initiative could provide us with valuable insight into how the disease spreads and who is most vulnerable,” he said.
Sir Rory Collins, BHF Professor of Medicine & Epidemiology at Oxford University, who leads UK Biobank, said health experts had moved quickly to arrange for the appropriate research access to GP data about UK Biobank participants.
He added: “The vast range of expertise already being applied to the UK Biobank data means that there are likely to be many ways in which these data would be used to help develop strategies to address this pandemic.”
He praised the generosity of UK Biobank participants. “I am sure they will be delighted to know that their efforts over many years are being used to tackle this crisis. They explicitly agreed to their health data being used in this way when they joined the study, and their generosity will be repaid many times over by the research community in the months and years ahead, as we learn more about the impact of this devastating illness on different people, and how to treat it.”
Professor Russ Altman of Stanford University, USA, and a UK Biobank approved researcher, commented: “I think there is an unprecedented opportunity to study how clinical and genetic factors affect the spread and outcome of this disease. Proper characterization of these factors could greatly help the health care system with managing cases from triage to treatment.”
UK Biobank has been tracking the health of its participants for more than a decade. Many are now in the age range likely to be most vulnerable to the disease. They have supported UK Biobank in many ways including taking part in MR brain and heart imaging, wearing activity monitors, and undertaking detailed health and lifestyle web-based questionnaires. Half a million people aged 40-69 years joined UK Biobank from 2006-2010.
Briefing note and FAQs on the Secretary of State’s notice to all GP practices
The Secretary of State for Health and Social Care has issued a notice to all GP practices in England (using the TPP or EMIS systems) which requires the GP practices to release the primary care data to UK Biobank, for the purposes of research into COVID-19.
The purpose of this note is to provide some additional scientific background to this request (which is contained at the end of this note) and to answer some questions, particularly to confirm that the necessary data governance arrangements are in place.