Two experienced data managers are tasked with the creation and maintenance of the automated collection system. Both have letters of access permitting access to the collection sites.
No identifiable data is collected centrally or available to any researchers. Pseudonym lookups which allow the clinicians to link back to the patients NHS number are maintained on the research servers, for which access is restricted to the data managers and clinicians only.
No researchers have access to any identifiable data. Clinicians have the ability to use the pseudonym lookup in order to identify a patient. This is in order to enable them to locate and mark the cancer locations on the images.
Only the two data managers are able to access the research server directly.
Once the de-identified copies have been transferred to the central storage, the IP resides with Cancer Research Technology – an arm of CRUK who fund the project.
In order to ensure all patients are informed about the exciting research taking place, posters are placed at the collection sites. However, there is no obligation to inform patients, as the project is only collecting de-identified copies of images and not using personal data for research. The NHS constitution states that it pledges “to anonymise the information collected during the course of your treatment and use it to support research and improve care for others”
Yes, we have ethical approval from the NRES Committee South Central - Oxford C - Ref: 14/SC/0258
Yes, we have patient representatives that participate in our steering group meetings.
We collect de-identified mammography images and associated de-identified clinical information.