Last updated Sep 24, 2017
UK Biobank is an important international resource for health research. A registered charity, it is funded by the Medical Research Council and Wellcome Trust and supported by the NHS.
UK Biobank is following the health of 500,000 volunteers in the UK who agreed to join the project between 2006-2010. Each participant signed a consent form to allow UK Biobank to access their medical and other health-related records for research purposes.
Participants could not have taken part in UK Biobank without signing the consent form. Their consent was provided on the basis that it is for the lifetime of the UK Biobank project. UK Biobank remains in regular contact with its participants via this website, annual newsletters and requests to take part in enhancement projects. Participants can withdraw from UK Biobank at any time, without giving a reason. The withdrawal options are set out on the UK Biobank website although to date very few participants have chosen to withdraw.
UK Biobank is already providing approved scientists with a wide range of anonymised data and samples to study the interaction of genes, lifestyle and environment in causing a wide range of diseases (such as cancer, heart disease, dementia, diabetes, depression and arthritis).
Further, UK Biobank has routinely linked to national death and cancer registries and to national hospital data electronic record systems for all its participants since 2010. UK Biobank has also established linkages to primary care records from a large and ever-increasing proportion of its participants (now over 50%) in England, Wales and Scotland.
UK Biobank extracts coded data for UK Biobank participants only. It is able to do this with the support of the Royal College of General Practitioners by working with companies that already provide data management systems to general practice for a wide range of activities This includes working with TPP’s SystmOne and Apollo Medical Systems on behalf of In Practice Systems (Vision). UK Biobank has written to GP practices informing them of the extraction of primary care data.
Letters to general practice:
- TPP – SystmOne
- InPractice – Vision
- TPP – SystmOne update 2017: New Practices, Previously contacted Practices
In undertaking this linkage and data extraction process, it is important to note that:
- UK Biobank will only release anonymised data to approved researchers for the purpose of health-related research for the benefit of the public;
- No identifiable data for any health care professional are being requested;
- Information that identifies participants, such as name and date of birth, will only be used by UK Biobank for the purposes of linking primary care data to the other data that it holds.
The following documents may also be of interest: