UK Biobank makes infection and health data available to tackle Covid-19
UK Biobank makes infection and health data available to tackle Covid-19
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;
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.
"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."
Sir Patrick Vallance, the government’s Chief Scientific Adviser
"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."
Professor Martin Marshall, Chair of the Royal College of General Practitioners
"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. I am sure UK Biobank participants 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."
Sir Rory Collins, BHF Professor of Medicine & Epidemiology at Oxford University, who leads UK Biobank
"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."
Professor Russ Altman of Stanford University, USA, and a UK Biobank approved researcher
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.
This notice is issued under the COPI (Control of Patient Information) Regulations. These regulations give the Secretary of the State the necessary power to require the release of patient information in certain circumstances (as in the present circumstances with the COVID-19 pandemic).
No, the way the notice has been prepared means that individual GP practices do not need to take any further action.
UK Biobank is one of the leading medical research resources in the world. It contains extensive phenotypical, genetic and health-record data on over 500,000 consented participants http://www.ukbiobank.ac.uk.
Yes, only primary care on UK Biobank’s 503,000 participants is included in the extraction. No primary care data on any patient who is not a UK Biobank participant will be extracted.
Yes, when UK Biobank recruited its participants, each and every one of them had to complete the consent form. This consent form contains a specific section – which had to be completed along with all the other sections – which sets out:
“I give permission for access to my medical and other health-related records, and for long-term storage and use of this and other information about me, for health-related research purposes (even after my incapacity or death).”
UK Biobank is a data controller for all of the data it holds and is registered as such with the ICO. This means that UK Biobank is obliged by law to store and process the data in accordance with the prevailing data protection regime (the GDPR) and in accordance with participant consent.
UK Biobank does retain the identifiers for each of its participants – which are stored separately to the rest of the data under a number of layers of encryption – but effectively de-identifies all participant data. Further, any indirect identifiers are also removed or redacted when data is released to researchers.
Yes, these are tested regularly and verified by external groups.
Yes, it has ISO 27001 and Cyber Essentials certifications.
Yes, a suitable communique will be sent out shortly.
The notice was carefully reviewed by the Department of Health and NHS Digital. Dr Martin Marshall, the Chair of the Royal College of GPs, was involved in the process and has issued the following release:
Further information on the scientific importance of being able to access the primary care records. There is considerable scientific value with obtaining complete and frequently updated primary care data for all consented UK Biobank participants to investigate the determinants of COVID-19 and its severity.
Public Heath England has already agreed to provide UK Biobank with rapid and frequent updates of the confirmed COVID-19 cases, and UK Biobank expects to be able to start making these de-identified data available to approved researchers in short order. However, given the current UK strategy of not routinely testing all symptomatic patients (e.g. the elderly, even when severe), especially if they are not admitted to hospital, researchers would not be able to assess fully the relevance of various genetic and non-genetic factors to COVID-19 severity and outcome at different ages. Nor would it be possible to determine the real prevalence in the population as a whole or the overall mortality rate among infected individuals (whereas, for example, AI experts may well be able to produce reliable estimates if the primary care data can also be added to the UK Biobank database).
Moreover, other data that are in the primary care records would allow more detailed analyses to be conducted. For example, it would be possible to assess the impact of different co-morbidities on the outcome of COVID-19, as well as the impact of concomitant medications (e.g. it has been suggested, but the evidence is weak, that ACE inhibitors and anti-inflammatory agents may result in poor outcomes). In addition, information about the course of the disease is likely to be more comprehensive (for example, cardiologists in Italy are reporting that inflammatory myocarditis is a serious complication of COVID-19, perhaps indicating a potential therapeutic strategy) in primary care records than in the other sources of health outcomes that are available to UK Biobank.
As indicated above, however, the vast range of expertise being applied to the UK Biobank data means that there are likely to be many more ways in which these data would be used to help develop strategies to address this pandemic.