Cancer clinical coding in primary care
Background
Between 2023 and 2025, the North Central London Cancer Alliance carried out a quality improvement (QI) project to understand the quality of clinical coded data in primary care, across the whole cancer pathway.
Information was drawn from an observational dataset review and qualitative data from stakeholder interviews, workshops, and discussions. It used primary care electronic health record systems, covering a population of over 1.4 million adults in the five North Central London boroughs.
The project’s methodology, findings and insights are published in the Journal of Medical Internet Research.
Key findings of the review
- Overall, the review found significant gaps and incomplete data, with huge variations across the pathway
- High coding completeness for ethnicity (86.5%) and language (68.7%)
- Low recording of employment status (2.4%)
- Low recording of family history of cancer (14.8%)
- Bowel and cervical screening coding aligned well with national data, but breast screening data was fragmented, due to manual processes and the absence of standardised codes
- 87% of expected new cancer diagnoses were coded in primary care records, leaving a 13% gap (cancer not coded).
- Staging and treatment data were rarely captured—limiting visibility of treatment journeys and personalised care needs
- 66% of eligible patients had a documented cancer care review, but other personalised cancer care elements like care plans and needs assessments were sparsely recorded.
Priority recommendations
The review showed that there are key opportunities for system-level improvement. The main recommendations include:
- Developing a primary care cancer coding data framework, with appropriate funding and incentives to implement this.
- Improving the interface between breast screening services and primary care, including digitisation of results
- Enhancing the quality and structure of information sent from secondary to primary care, aligned with SNOMED coding
- Raising awareness of the value of accurate cancer coding in primary care to support care quality, service planning, and research.
Full list of recommendations for Improving Cancer-Related Primary Care Data
Minimum dataset specification for primary care
The first recommendation from this project was the development of a minimum dataset specification for primary care.
Standardising coding practices in primary care will help:
- Identify and address gaps in data collection and coding diversity.
- Improve patient care through better tracking of risk factors, referrals, and treatments.
- Enhance data interoperability between primary care and secondary care, ensuring seamless communication.
- Support targeted interventions by capturing sociodemographic data to address health inequalities.
- Alignment with national and local priorities such as QOF and the evolving GP registration process (PRF1).
Stakeholders in primary care, Cancer Alliances and digital health partners can implement this minimum dataset. Click on the links below.
Cancer clinical coding minimum dataset specification for primary care (Jan 2026)
Cancer primary care MDS technical guide (Jan 2026)
Use cases to support MDS implementation with logic model examples
MDS template in EMIS Web
The template for the minimum dataset, developed in collaboration with the North Central London ICB, is available in all GP EMIS Web systems in the area and can be accessed directly.
It can be used to support GP practices to code cancer-related information, from primary care consultations or from information received from hospitals. This simple system supports adherence to the MDS.