Who is involved in the collection of images?

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.

Is any identifiable data collected?

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.

Who has access to any identifiable data?

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.

Who has access to the research servers?

Only the two data managers are able to access the research server directly.

Who owns the IP for the de-identified copies?

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.

Are patients told their images might be de-identified and used for research?

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”

Do you have ethical approval?

Yes, we have ethical approval from the NRES Committee South Central - Oxford C - Ref: 14/SC/0258

Are patients consulted about your research?

Yes, we have patient representatives that participate in our steering group meetings.

What are you collecting?

We collect de-identified mammography images and associated de-identified clinical information.