Improving data completeness
This page provides information for how NHS organisations in England and Wales can improve their data for breast cancer audit.
Each NABCOP annual report made recommendations on the care and treatment received by older women diagnosed with breast cancer, using results produced from data analysis. These recommendations also encouraged all NHS organisations who diagnose and treat such women to review and check their data in order to ensure it is complete and accurately reflects local practice. This will continue to be paramount for the two new breast cancer audits launched in October 2022, which will expand on the work of the NABCOP.
The NABCOP published the NHS organisation-level information that contributed to each of the core indicators reported on in the annual report so an NHS organisation could see how they perform in comparison to others. Each organisation was recommended to review this information and ascertain whether it accurately reflected local practice. Where this was considered not to be the case, there would be a need for further investigation to understand why. The following information was designed to help achieve this for the NABCOP, and remains relevant to future breast cancer audits.
For NHS organisations in England
For NHS organisations in England, there are a number of ways to improve the data that are submitted:
National Cancer Registration & Analysis Service (NCRAS) CancerStats website
The CancerStats portal gives NHS providers the ability to review the quality of their data submissions to the NCRAS. It allows users to check the completeness of key data items and conduct comparisons with local, regional and national averages to calculate relative performance. NHS Staff on an N3 Network are able to access the portal by registering with CancerStats.
NHS Trusts can look at some key breast cancer data items submitted as part of the Cancer Outcomes and Services Dataset (COSD).
- The NABCOP Level 2 report gives a summary of these key data items and enables Trusts to see where there is room for improvement.
- The NABCOP quarterly report gives a 3-month snapshot of data completeness for key data items.
- Users of the Somerset Cancer Register (SCR) system can download a SCR dataview. This allows the user to look at patient level data and identify areas that require improvement.
Data Liaison in England
The Data Liaison team within the NCRAS have a wealth of knowledge on cancer pathways and processes within NHS Trusts and can help to improve the quality of data submissions. Each geographical region has an allocated Data Liaison Manager who can be contacted for further information and support.
COSD Data Case Studies
The page below provides some examples of the different approaches used by some NHS trusts to ensure their COSD submissions to NCRAS are as complete as possible.
Recording recurrence in COSD[text taken from the COSD Newsletter circulated Nov-2021]
Recording Cancer Recurrence Data
It is hugely important for many audits and national benchmarking projects that recurrent cancers are recorded correctly through COSD. Currently this is done by creating a Non-Primary Cancer Pathway and must involve recording [CR6500 – DATE OF NON PRIMARY CANCER DIAGNOSIS (CLINICALLY AGREED)], and then the data items (as applicable) in the recurrence section of COSD. It is important that this includes:
- [CR7100 – ORIGINAL PRIMARY DIAGNOSIS (ICD)]
- [CR6520 – METASTATIC TYPE]
- [CR1590 – METASTATIC SITE].
Cancer recurrence can be defined as:
The return of cancer after treatment and after a period of time during which the cancer cannot be detected. The length of time is not clearly defined; however, the patient would have previously been informed that they are free of the disease or that the disease is not detectable. The same cancer may come back where it first started or somewhere else in the body. For haematological malignancies, recurrence may be more commonly referred to as a relapse.What are the types of recurrence? The distinction between the types of recurrence of a previously treated tumour requires clinical interpretation. There are different types of cancer recurrence, for example:
- local recurrence – meaning that the cancer has come back in the same place it first started
- regional recurrence – meaning that the cancer has come back in the lymph nodes near the place it started
- distant recurrence – meaning the cancer has come back in another part of the body, some distance from where it started (often the lungs, liver, bone marrow, or brain)
If you have any questions or would like additional support around recording recurrent cancers in your MDT, please contact your Regional Liaison Manager (NCRAS), who would be very happy to support you with advice and training.
For NHS organisations in Wales
To be able to achieve a high standard of data, and as part of the ongoing data validation, a number of processes have been introduced. These have been initiated by the Wales Cancer Network (WCN) information team as a guide to aid the MDTs within the local health boards to review, check and improve their data on breast cancer patients:
- National Audit Time Frame document for Validation.
- National Audit Breast Validation Checklist.
- Quarterly reports initially to the cancer services co-ordinators with any inconsistencies highlighted.
- Yearly reports run and distributed to designated clinicians within the health boards for validation of accuracy and completeness.
- Validated reports signed off by the network audit lead for data submission.
- An extensive amount of work is undertaken by the WCN Information Specialist, individual hospital co-ordinators, clinicians and the Network audit lead before finally submitting the Welsh Breast data.
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