The data we hold are only shared when we have received permission to do so as part of the approvals process for our research study. Moreover, data collected by the CSPRG are only shared with the following groups, where a clear legal basis for such sharing exists:
- Approved collaborators and sub-contractors for specific studies on a need to know basis if they have legal contracts with Imperial College London or CSPRG. Wherever possible no patient identifiable data are shared, unless absolutely necessary and where we have the appropriate approvals in place to do so.
- Organisations such as NHS Digital, Cancer Registries, GPs, etc. to obtain additional data for research. These organisations already hold the patient identifiable information which they obtain from the NHS and other sources. We sometimes provide them with a list of patients taking part in a particular study and ask them to match our study participants to their data so that they can supply us with follow-up data that are required for our research. For example, we supplied NHS Digital details of individuals on our UKFSST study to determine who has been diagnosed with a colorectal cancer.
The legal contracts with collaborators ensure that the shared data is held and processed securely and no further sharing is allowed without our permission or knowledge.