I am privileged enough to be invited back to this year’s NCIN Cancer Outcome Conference in Birmingham over the next few days. I attend in the capacity of patient advocate involved in the many groups, boards and committees as well as moderator for our Phyllodes Support Group. As always, my aim is to learn as much as I can about different aspects and to report back to the many others who are interested in learning more.
NCIN by way of reference is the National Cancer Intelligence Network and “is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.”
In short, they are joining together different data collation systems, ie hospital records, GP records, chemotherapy records etc. Doing some work with the data input sites (ie hospitals and clinicians etc) to ensure the data is good, clean and accurate. Then analysing the data many many ways.
This analysis will lead us to identify trends in cancer, perhaps geographically, perhaps by age or even occupation! We will also be able to determine if there is a bottleneck in good outcomes, perhaps at the GP level or perhaps lack of information and awareness about symptoms. We can see see where surges in screening have taken place and then work out why – such as the Jade Goody effect for cervical cancer screening. The data will also be able to identify if there is a better patient outcome if treatments such as chemo/radiotherapy are given for different cancers and at different times. The data could perhaps also tell us if the quality of life and survival is acceptable IF prolonged with additional treatments.
I know the next few days will be inspiring, rewarding and enlightening but I also know that I have two days of data and information coming straight at me. Don’t bother asking me my name by Friday night!