The Cancer Outcomes and Services Dataset (COSD) is the national standard for reporting cancer by NHS Trusts in England to the National Cancer Registration and Analysis Service (NCRAS). The NCRAS quality assures, analyses and publishes cancer data with the aims of improving cancer diagnosis and treatment and informing cancer services and patient care (National Disease Registration Service, 2021). Version 9.0 of COSD came into effect in April 2020 with the aim of improving data quality without creating undue burden on NHS Trusts and the NCRAS (National Cancer Intelligence Network, 2022). The current version of the dataset collects and reports (via the CancerStats2 platform) key activity data on holistic needs assessments (HNA), personalised care and support plans (PCSP) and end of treatment summaries (EOTS). HNA and PCSP coding options include: Offered and undecided; Offered and declined; Offered and accepted; Not offered; and Offered but patient unable to complete.
To meaningfully indicate the quality and breadth of personalised cancer care delivery, the HNA, PCSP and EOTS data items in COSD need to be complete for all patients as appropriate. It is estimated that one-quarter of Trusts do not submit HNA data, while other Trusts submit low numbers. Reasons for incomplete data vary by trust but are likely to include: a lack of resource for manual data entry into COSD; trusts not employing an electronic HNA/PCSP system (from which COSD data is a by-product), or a lack of automated flow of the data from the electronic HNA/PCSP system into COSD.
Where NHS Trusts use recent versions of the Somerset Cancer Register (SCR) or InfoFlex to deliver HNA and PCSP (called an eHNA on these systems) the data will be reported to COSD as part of the normal uploads. Other trusts use the Macmillan Cancer Support's My Care Plan (eHNA) platform, which has a new data export function for patient data to be imported into SCR or InfoFlex and thus into COSD. Although the majority of this data migration should be automatically matched, it does require manual intervention to ensure the HNA and PCSP COSD fields are correctly populated. Some trusts may need to develop other options for transmitting data from other software platforms (such as EPIC) into COSD.
We are aware, however, that numerous trusts rely on manual reporting, as they do not have systems in place that automatically transmit HNA, PCSP and EOTS data into COSD. Manual reporting is burdensome. Some Trusts are fortunate to have cancer data analysts to extract and submit HNA data, but in our experience this work is undertaken by a senior cancer nurse in the absence of cancer data analysts. Although it is the responsibility of lead cancer nurses to track personalised care activity, their time is arguably better spent on leading clinical decision-making and evidence-based practice, developing cancer care colleagues, providing nurse-led services, leading quality improvement, innovating practice and implementing strategic plans.
Interpretation of COSD data needs to be meaningful. One meaningful output is calculating the ratio of PCSPs to HNAs, as this measures whether care and support has been provided following each conversation based on an HNA - indicating the quality of care – rather than a count of HNAs or PCSPs by themselves. The NHS Cancer Programme team for England has proposed using the Rapid Cancer Registration Dataset with COSD to estimate (at a Cancer Alliance level or wider) the proportion of people diagnosed with cancer who are offered, or have received, an HNA and PCSP and the proportion who have received an EOTS. Cancer Alliances should consider the development of local dashboards, akin to that developed by the South East London Cancer Alliance and others, to help overcome challenges with reporting datasets, track trends, provide meaningful data to Trusts for personalised care quality improvement and address service variation and health inequalities.
It is vital to have an accurate and comprehensive COSD dataset and meaningful metric reports for reviewing and informing the roll out of personalised cancer care. These reports can then be considered alongside other important sources of data for quality improvement, such as the Cancer Patient Experience Survey. Work is, however, needed at all levels to reduce the reporting burden on clinical staff and ensure the importance of having high-quality HNA, PCSP and EOTS data is widely understood (by all major stakeholders) to improve access to, and the quality of, these key personalised care interventions.