Access to data

The iCARE team have access to data that are routinely collected within the Trust as well as other datasets. We have a large volume of curated datasets that applicants can request to use in research, evaluation or clinical audit. Our curated datasets are detailed in our metadata catalogues. Please list the data and dataset you require access to in your application.

If the data you require is not already curated or requires linkage to other data (including WSIC NWL data) then it will need to be processed, curated and anonymised by NHS staff in the iCARE team. Please contact us to discuss this prior to application.

If you are applying for funding for your project, we would welcome a discussion to ensure that we can support you if successful and to provide input and assurances around data availability, information governance, ethics, PPIE in digital projects, security and anonymisation.

We are happy to have an informal discussion to help you complete the NIHR Imperial Biomedical Research Centre Data Access Request Form. Once completed, the form should be emailed to imperial.dataaccessrequest@nhs.net for review. NIHR Imperial BRC Data Access and Prioritisation Committee meetings take place monthly, usually on the last Friday of each month. To ensure review at the next Committee meeting, you will need to submit the form by 5pm of the Wednesday 16 days before the meeting.

After triage by members of our team, the application will be reviewed by the Imperial Data Access and Prioritisation Committee, chaired by the ICHT Caldicott Guardian. The committee ensure that projects using NHS data:

• Are in the public interest.
• Meet all information governance and data protection requirements.
• Have appropriate clinical sponsors – the clinical sponsor is a vital role in all projects using patient data. The clinical sponsor will ensure that the data are used appropriately within clinical context, assist in ensuring that outputs of the research are relevant to clinical care and where possible used to impact or change care for the better in the future. The clinical sponsor must be a practicing clinician at Imperial College Healthcare NHS Trust.
• Have engaged with patients and the public – please see the Imperial PERC Guidance on Involving the Public in Health Data Research (PDF) on involving the public in health data research or the Public Involvement Resource Hub for guidance. If your project does not have a patient involvement plan please let us know as the NIHR Imperial Patient Experience Research Centre supports Imperial BRC linked researchers and can offer advice.
• Are academically robust in light of the data available, and are not duplication (if similar projects have been approved collaboration will be encouraged) – we have a network of NIHR Imperial BRC funded data scientists, clinicians, methodology experts and statisticians that offer advice – please contact us.
• Are reviewed by the ICHT commercialisation group if required – any project that has commercial funding will need to be declare this from the offset.
• Are monitored and feedback provided periodically to the Committee – access to the data is conditional on keeping the Committee up to date as to your work and outputs.

It is important that these points are clearly articulated in your application – please contact us if you need any assistance.

If your application is judged to be incomplete or missing information/details then we will provide feedback before it is reviewed at the NIHR Imperial BRC Data Access and Prioritisation Committee. You may still be invited to the next stage of application on the condition that details are completed before the meeting.

Privacy notice:

All projects are reviewed by the NIHR Imperial BRC Data Access and Prioritisation Committee. As part of our commitment to SAFE projects and FAIR access we publish high level details of all projects on the iCARE public facing tracker. This includes the names of the project team (Principle Investigators, Clinical Sponsors and researchers), and information about the project itself (technical summary, lay summary and public benefit statement). By submitting your project proposal to the Committee, you are agreeing for this information to be included in our publicly available project tracker. If at any point you wish for these data to be changed or removed then please contact imperial.dpo@nhs.net.

You will be asked to send a representative to the Imperial Data Access and Prioritisation Committee to present your proposal and take questions from the panel, consisting of representatives of the ICHT information governance team, clinicians, academics, lay partners and ICT staff.

Once your project has been approved you will be contacted to begin setting up your access to the project data on the iCARE Secure Data Environment. This will involve signing our Terms of Use for iCARE Data, completing mandatory data protection training and gaining access to the virtual desktop infrastructure.

Once you have obtained access to the data and started your analysis work, you will be responsible for adhering to the rules outlined in the Terms of Use for iCARE Data. These relate to the way in which the data is accessed and the methods in which you should conduct your research. You will also be required to provide an update to the NIHR Imperial Data Access and Prioritisation Committee six months after you first gain access to the data, outlining the progress you have made. It is your responsibility to report any changes to your project to the Committee as soon as possible. If after twelve months of accessing data you project is still on-going, you will need to re-apply for continued access to the Committee.

You will also need to ensure that you have properly acknowledged the iCARE Team and Environment, and the NIHR Imperial Biomedical Research Centre, in all project outputs. For the exact wording you should use in the acknowledgements section of your paper, please contact the iCARE Team. You should also send a copy of your research paper to the NIHR Imperial Data Access and Prioritisation Committee for review before submitting it for publication.