Your Data
Use of Medical Information in the Biobank
Along with your anonymised samples, it is often important for researchers to have certain information from your medical records. These data play a pivotal role in empowering healthcare providers and researchers to deliver more effective, patient-centred, and ultimately higher quality healthcare, leading to improved diagnosis and treatments for patients.
We ask your permission to check your records at regular intervals whilst storing your samples and to provide relevant information to researchers when requested.
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What Information May Be Collected
Medical information gathered may include:
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Details about your diagnosis, treatments, and response to treatment.
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Family history.
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Other illnesses you have or medications you may take.
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Lifestyle factors such as smoking and drinking habits.
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Updates to your health record over time, so that researchers have the most accurate picture possible.
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This information may be combined with data from other sources (such as national disease registries or hospital episode records) to give researchers a fuller understanding of patient outcomes.
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How Your Data Are Stored
Biobank staff gather this information in strict confidence and information provided to researchers will always be anonymised as with your samples, which means it cannot be traced back to you.
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Your data are stored in secure, encrypted databases within NHS-approved IT systems.
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Only authorised biobank staff can access it, using password-protected accounts and monitored audit logs.
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Samples and medical records are stored separately and linked only by a unique code so your name or personal details are never shared with researchers.
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We follow all UK laws and regulations, including UK GDPR, the Data Protection Act 2018, and guidance from the Human Tissue Authority and Health Research Authority.
How Your Data Are Shared
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Researchers must apply to use data. Applications are reviewed by a scientific and ethics committee.
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Only information essential to a specific project is shared.
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Data is provided to researchers in anonymised or pseudonymised form, meaning it cannot be traced back to you.
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Research may involve academic institutions, NHS partners, or carefully reviewed industry collaborators. Any sharing is carried out under strict legal agreements.​
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How Your Privacy Is Protected
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We operate on a data minimisation principle, ensuring researchers only receive data they truly need.
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All transfers of data use secure, encrypted methods.
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We carry out regular audits to check compliance with data protection standards.
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Any new type of data use or linkage must be reviewed and approved by an independent ethics committee.
Biobank staff gather this information in strict confidence, and information provided to researchers will always be anonymised, just like your samples. This means it cannot be traced back to you personally.
More information on our privacy notice can be found here:
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