Data sources used in the NKCA data dashboard
The data sources used in the NKCA data dashboard include the Rapid Cancer Registration Dataset (RCRD) and the Cancer Outcomes and Services Dataset (COSD). COSD data are submitted to the National Disease Registration Service monthly via Multidisciplinary Team electronic data collection systems. Clinical sign-off of data submitted to NDRS is not mandated in England. The information held in the registration dataset is compiled from a number of sources.
Summary of datasets used in the NKCA data dashboard:
- Rapid Cancer Registration Dataset (RCRD)
- Cancer Waiting Times (CWT)
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Radiotherapy Data Set (RTDS)
- Systemic Anti-Cancer Therapy (SACT)
- Cancer Outcomes and Services Dataset (COSD)
While RCRD is compiled mainly from COSD records, the speed of production means that the range of data items is limited and several standard data items in the complete National Cancer Registration Dataset (NCRD) are unavailable. We therefore also report data completeness for a few select items from the COSD that are not reported in the RCRD, but that will be required to develop and report key performance indicators. It is also worth noting that RCRD does not have complete coverage of all patients diagnosed with kidney cancer in England during the reporting period. To access more information about the RCRD click here.
RCRD and COSD are received by NATCAN on a quarterly basis (February, May, August and November). As of April 2025, the RCRD received contained patient data submitted to NDRS by English NHS trusts for people diagnosed between 1st January 2018 and 31st October 2024. For the data quality metrics that use RCRD, we have included the three most recent years of data in this quarterly report except we have not included October 2024 so that we could align with the quarters by calendar year (Q1 = Jan-Mar; Q2 = Apr-Jun; Q3 = Jul-Sep; Q4 = Oct-Dec).
Some of the COSD data items received (e.g. lesion size and TNM) contained patient data submitted to NDRS by English NHS trusts for people diagnosed between 1st January 2018 and 31st August 2023. For the data quality metrics that use these COSD data items, we have included the latest 21 months of data in this quarterly report except we have not included July and August 2023 so that we could align with the quarters by calendar year.
For the performance indicators (first treatment within 31 days of decision to treat / first treatment within 62 days of urgent referral), the NKCA utilised data from RCRD and linked datasets. CWT dataset was used to identify urgent referral, decision to treat date, factor in wait time adjustments and to identify people whose first treatment was active surveillance or palliation. HES APC dataset was used to identify kidney cancer surgery, radiotherapy and systemic anti-cancer therapy.RTDS was also used to identify radiotherapy and SACT dataset was used to identify systemic anti-cancer therapy. The most recent people included were those who were diagnosed on 31st December 2023 due to the requirement of 31 days of follow up from decision to treat date and 62 days of follow up from urgent referral. There is also currently a lag in receipt of required Hospital Episodes Statistics Admitted Patient Care (HES APC) data and Systemic Anti-Cancer Therapy (SACT) data compared the main cancer registration dataset (RCRD).
Why do we report data completeness?
We report on data completeness as this aspect of data quality underpins what we can reliably and robustly report as an audit. We encourage all provider teams to review their data completeness and make improvements as this will increase the number of people we can include in analyses and increase the range of analyses we can conduct.
How did we select our performance indicators?
The first performance indicators we report quarterly are:
‘Percentage of people who receive treatment for kidney cancer that receive their first treatment within 31 days of decision to treat’
‘Percentage of people who receive treatment for kidney cancer that receive their first treatment within 62 days of an urgent referral’
These were selected based on methodological development work conducted by the NKCA. The NKCA State of the Nation report indicators are currently challenging to report quarterly due to 1) current limitations of the RCRD such as lag and completeness of TNM and lesion size which are used for cohort definition and 2) small numbers at the Trust-level when reporting on a quarterly basis.
Going forward, the team will continue development work, in consultation with stakeholders, to determine which performance indicators are appropriate for quarterly reporting using the RCRD.
How have we chosen these specific data items to focus on?
The specific data items we report the completeness of were chosen in collaboration with the audit’s clinical and methodological experts.
Clinical nurse specialist was chosen as we would like to better explore the experience of people diagnosed with kidney cancer so improving the completeness of this data item is key.
Ethnicity was chosen as we would like to thoroughly explore inequalities in cancer care which is a priority for NHS England. To enable this, it is important that every patient has ethnicity accurately recorded.
Lesion size was chosen as it is important in kidney cancer for assessing the eligibility of patients for different treatments.
Multidisciplinary team (MDT) first meeting date was chosen as we would like to investigate what proportion of people diagnosed with kidney cancer are discussed at an MDT before undergoing treatment.
Morphology was selected as it could allow us to explore kidney cancer subtypes.
Performance status was chosen as it is important across cancers for assessing the eligibility of patients for different treatments.
TNM, which is stage of disease where ‘T’ represents the local stage, ‘N’ represents the presence of lymph node involvement and ‘M’ represents the presence of metastatic disease, is essential for risk stratifying patients. In kidney cancer TNM is particularly important as knowing whether a patient is stage I-IV does not provide information regarding regional lymph node involvement as well as distant metastatic disease. We are also interested in whether full T stage (T1a, T1b, etc.) is recorded as that is useful for assessing eligibility for different treatments.