Barts BioResource

Data & Research Scope

Nature of the data

The data is special category (healthcare) data under Article 9 of the GDPR.

Amount of data collected and data use

The Barts BioResource will collect the data specified above for consented participants, which is likely to be extensive. The data provided to approved researchers will be subject to data minimisation processes where necessary.

Participant control in the Barts BioResource

Participants are able to fully withdraw from the Barts BioResource. Their data will not be used further after withdrawal, to the extent reasonably possible and as qualified in the Patient Information Sheet as per the informed consent process.

Expected use of data

Barts BioResource participants give full, informed consent for broad research uses and hence the anticipated uses of the data should be expected. On the instances where a potential use could be considered outside of this remit (none such have been undertaken to date), the view of the Barts BioResource leadership has been that patient views should be considered and, if possible, be surveyed before proceeding. A careful and considered approach will be taken for potentially unexpected uses.

Data collection frequency and retention

Data will be extracted from the clinical and other systems described above on a regular basis, expected to be monthly-quarterly.

Number of individuals affected

By the end of March 2020, approximately 23,400. The Barts BioResource continues to enrol thousands of patients each year.

Geographical Area

Participants recruited into the Barts BioResource are currently from London-based hospitals (Barts Health NHS Trust hospitals) and only UK medical records are currently being included. The domicile of individuals is likely to be mostly the UK or EU but may include individuals from any region in the world. Data sharing may occur to researchers and commercial companies internationally under the terms of the Material Transfer Agreement (MTA) and in compliance with the GDPR and Data Protection Act 2018 and all other related legislation.