JMIR Publications

ABSTRACT

Background:

Background:

The North Central London (NCL) Cancer Alliance carried out a quality improvement project to fill a distinct knowledge gap around the quality of primary care cancer coding.

Objective:

Objective:

To establish the quality of clinical coding in North Central London primary care, encompassing both quantitative measures (e.g. coding completeness and variation) and qualitative dimensions such as clinical relevance, and workflow alignment.

Methods:

Design: This was a mixed methods quality improvement project, combining an observational dataset review and qualitative data from stakeholder interviews, workshops and discussions. The dataset review evaluated the completeness and variation in cancer clinical coding along the patient pathway, which was split into three domains: (1) patient characteristics and risk factors, (2) cancer screening attendance and (2) living with cancer. It was conducted in NCL primary care electronic health record systems, covering a population of over 1.4 million adults across five boroughs.

Results:

Results:

Cancer-related clinical coding in North Central London primary care revealed significant gaps despite high completeness for ethnicity (86.5%) and language (68.7%). Employment status (2.4%) and family history of cancer (14.8%) were under-recorded, with wide variation in coding practices. Screening data showed good alignment, with national datasets, for cervical and bowel screening, but fragmented and inconsistent breast screening data due to a lack of standardised codes. Cancer diagnosis coding was incomplete (73% recorded), and treatment and staging data were almost entirely absent, limiting proactive management of long-term consequences. Stakeholder input highlighted inconsistent template use, limited data updates, and insufficient incentives as key barriers to better coding.

Conclusions:

Conclusions:

The QI project has provided a detailed insight into the many dimensions of cancer coding and sheds light on many factors that underpin variation and coding preference. We offer a number of recommendations. The prioritised ones include; the need for a cancer clinical coding data framework for primary care supported by appropriate funding and incentivisation; improvements in the Breast screening pathway and its interface with primary care; improve quality of Secondary care information that is sent to primary care; disseminate the importance of coding of cancer activity in primary care. Clinical Trial: No registration