The National Cancer Registration and Analysis Service works closely with hospital trusts to determine sources of data that can be used to complete the cancer outcomes and services dataset. It also works with the software suppliers of cancer-management systems to ensure that data items can be recorded. Compliance with data standards is monitored by local CCGs, but I recognise that that is not enough, as data is incomplete after some eight years.
Currently, women with metastatic breast cancer are counted only when they die. That is despite the fact that, since 2013, it has been mandatory for trusts to collect data such as the number of women involved, how long they have survived and whether there are any health inequalities. It cannot be acceptable to count only the dead, not the living. Will the Minister commit to ensuring that the 2013 mandatory requirement to collect data on women with metastatic breast cancer is enforced?
Yes. As I explained in my earlier answer, one of the challenges is that there is not a consistent way of capturing the data. We need to sort that out: we need to make it simple; we need to make people understand what data we are collecting; and we need to make sure that, for both breast cancer patients and all metastatic cancer patients, we know where they are and that we are helping them with this disease as effectively as we can.