Our Data

ABSTRACT 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 dramatically improve the health of the UK population, by preventing strokes from occurring.

We recognise the key importance of using such data in a transparent, compliant and secure manner. We have and will continue to consult with stroke 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 stroke survivors, carers of stroke survivors, researchers, medical professionals and members of the general public.

All the data which we use will be in anonymised form and will be kept completely secure at all times. All the data we extract from the NHS will be de-identified. 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 routine care team (the team that would normally have access to it). Where it is necessary to link data from different NHS organizations, we will first ask permission from Confidentiality Advisory Group of the Health Research Authority to do so and will ensure the minimum amount of identifiable data is used.

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