Being able to follow your health over many years is crucial to the value of UK Biobank as it allows researchers to study how our genes and lifestyle influence the development of disease many years later.
How we follow your health
There are a number of ways that UK Biobank follows your health:
- Linkage to national registries – links to national cancer and death registries.
- Linkage to hospital information – links to information collected by hospitals about inpatient admissions (including diagnoses and underlying conditions), and operations and procedures.
- Linkage to primary care information – links to general practice (GP) records. We receive coded GP data, which contains codes about diagnoses, prescriptions and referrals, but no confidential notes or letters. Primary care data give researchers unprecedented insight into conditions that are largely managed by GPs such as diabetes, dementia and mental ill health.
- Online questionnaires – we send you regular emails inviting you to complete questionnaires about specific topics, including your health. We are particularly interested in finding out about health conditions that are difficult to capture through linkage to health-related records such as mental health, cognitive function, sleep disorders and neurodiversity.
We check all the data we receive from these sources before it is released to ensure that no information which could be used to identify you is made available to researchers.
Why we follow your health
Combining data from national death and cancer registries, healthcare records and questionnaire data with the other data we already have about you provides researchers with a picture of your health, both before and after certain diseases are diagnosed.
This helps research into the potential causes and mechanisms of disease as well as how to treat and prevent them.
Do I need to contact you about my health?
There is no reason for you to contact UK Biobank about your health since we follow your health through linkage to electronic health-related records.
Collecting data electronically on a regular basis (annually for example) means we do not have to keep asking you about changes in your health. It will also contain lots of detail on treatments, operations and procedures, and prescriptions that you may not remember.
Will you provide me with feedback about my health?
UK Biobank does not provide participants with health feedback and all participants agreed to this important principle when they joined the study.
You can find out more about this ‘no feedback approach’ in your agreement with us.
Can I help with research when I die?
Some people choose to leave their body to medical research when they die. UK Biobank is not able to take possession of a body (or organs such as the brain and heart).
However, if you wish to leave your body to science, you should talk to your local teaching hospital which will be able to advise you of the steps to take.