Our Data

BIRDI uses of routinely collected data, that is information collected in healthcare records and medical tests as part of the delivery of care. This data has the potential to improve understanding about outcomes and guide complex decision making for TBI patients.

We recognise the key importance of using such data in a transparent, compliant and secure manner. We have and will continue to consult with TBI survivors, carers and the general public, to ensure that everything we do is in the public interest. The project has been reviewed and approved by a local (University of Plymouth) and national (Health Research Authority) ethical review board. It is overseen by a study oversight committee, made up of TBI survivors, carers of TBI survivors, researchers, medical professionals and members of the general public.

All the data we extract from the NHS will be de-identified and will be kept completely secure at all times. We will never knowingly pass on data which includes information which can be used to identify people. For the vast majority of the project, we will only handle identifiable data within the direct care team (the team that would normally have access to it).

As part of this project we are also linking to data stored as part of One Devon (Population Health Management - One Devon) which is hosted by NHS Devon ICB, outside the direct care team. As patient information is processed without consent and outside the direct care team, is it subject to Regulation 5 of the Control of Patient Information regulation 2002/’section 251 support’ from the Health Research Authority (HRA) on advice from the Confidentiality Advisory Group (CAG), an independent committee with expert and lay members

This approval process can be used for the benefit of medical research with confidential patient information where it was not possible to use anonymised information and obtaining consent was not practical. The CAG have considered that there is sufficient public interest to temporarily lift the common law duty of confidentiality and enable access to the requested confidential patient information under section 251.

We will ensure that people have the opportunity to opt out of the use of their data for this research project. We will also ensure that anyone who has joined the NHS England data opt out register is not included in our research.