Last updated Jun 21, 2019
An overview of UK Biobank
UK Biobank is an open access resource for accredited researchers anywhere in the world. Its main purpose is to provide a resource for research on the diseases of midlife and old age. UK Biobank has already been used in important research projects targeting a wide range of common, chronic disorders, and this will only increase over time. Hundreds of studies are underway that will have a direct impact on the delivery of health care. For instance, researchers have already found that type 1 diabetes is as common in adults as children (but many adult cases are misdiagnosed) and revealed that shift work increased type 2 diabetes (regardless of genetics). Imaging data have shown non-alcoholic steatohepatitis (NASH) to be more common than previously thought, while work to identify genetic variants that predict glaucoma, links between air pollution and heart health, earlier detection of dementia, bone and joint disorders and the better understanding of adiposity continue apace.
Why is data from GP practices so important?
Medical records held within GP practice are very valuable for research. They contain the vast majority of a person’s health care information. Linking to GP practice records is crucial to research in a range of serious diseases including dementia, asthma, COPD and diabetes, and is the only way UK Biobank can follow the health of its participants over time.
Recruitment to UK Biobank occurred between 2006-2010. The NHS provided contact details to allow UK Biobank to invite people aged 40-69 years to take part. More than 500,000 volunteer participants went out of their way to do this, travelling to an assessment centre, and for about two hours spending time answering questions providing lots of information about their health and well-being, as well as providing samples of their blood, urine and saliva.
Each participant gave their express informed consent for UK Biobank to link to their medical and other health-related records for research purposes. UK Biobank participants could not have taken part in UK Biobank without completing the sign-up process and the consent form. Their consent was provided on the basis that it is for the lifetime of the UK Biobank project.
UK Biobank participants can withdraw at any time.
Staying in touch with our participants
UK Biobank stays in regular contact with participants so that it can tell them how the resource is used. We send them a newsletter annually, with updates on who is accessing the resource and what research is being done. In addition we contact them about other UK Biobank projects they can participate in. For example, several times a year we email our participants online questionnaires about different aspects of their health and wellbeing. We have also sent out accelerometers to over 100,000 of our participants to record their daily activity for a week.
We have also written to many thousands of participants to invite them to take part in our imaging project. As of February 2019, 34,000 have already done so. They travel to one of our assessment centres, and go through a series of questions and tests including brain, heart and body MRI, a DEXA scan of their bones and many more measures which takes several hours. By the end of this project we expect to have completed imaging on 100,000 participants. For more information visit the imaging website.
Managing primary care extracts at scale
UK Biobank is working closely with the GP systems suppliers, including EMIS Health (EMIS Web) and TPP (SystmOne), to manage the extract of primary care data from UK Biobank participants in a secure, scalable and sustainable way. UK Biobank is communicating directly with each and every one of the 8,000 GP practices (EMIS & TPP) across England to set out the purpose of the data extract, evidence of the consent from participants, and reassurance that the extract only involves patients registered at a practice that have explicitly consented to participate in the UK Biobank study. The Royal College of General Practitioners have endorsed UK Biobank’s proposed primary care data extraction.
UK Biobank is able to ensure that only data which relates to UK Biobank participants is extracted. This is achieved by UK Biobank providing its participants’ identifiers (NHS number, date of birth and gender) in an encrypted format and via secure transfer for the purpose of precisely matching to relevant records only. Only the matched participant records from a practice will be extracted. Extracted data are returned to UK Biobank in a similarly encrypted format and via secure transfer. Only information that does not identify participants will be provided to approved researchers undertaking research studies that are in the good of public health.
GP practices have been asked to agree to the data extraction – which can be done quickly, easily and with the minimum of effort by enabling the data sharing agreement within their practice management system. From this point, the linkage extract process will be undertaken centrally by the system suppliers, and does not require any further action on their part.
What information is being extracted from GP practices?
The information extracted from the health records of consented participants will comprise data regarding the patient’s health and well-being and interactions with their GP Practice. The type of information includes:
- Appointment dates and attended status
- Coded diagnoses, symptoms, observations, referrals and associated dates
- Prescriptions and dates prescribed
- Lab test results and date the test was performed
- Immunisation records
No identifiable information about any person who works in the practice or sees the patient will be collected. The data extraction is not focussed on any particular condition as UK Biobank is a resource used for a wide variety of research: published papers.
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If you require more information, please, do make contact with UK Biobank. Alternatively, you may find the links below of help:
Need more information?
Telephone: UK Biobank Participant Resource Centre, 0800 0 276 276, 8am-7pm Monday-Friday and 8am-4pm Saturdays.