Lung Cancer Screening Data Set user guidance

This guide is designed to accompany the Enhanced Technical Output Specification (ETOS) and provide users with more detailed information about the data requirements for the data tables and the data items contained within.

A full range of documentation can be found on the Lung Cancer Screening Data Set (LCSDS) data set web pages, and includes the Enhanced Technical Output Specification (ETOS), Data Model and this guidance. 

This guidance will be updated as work progresses on the data set.

The LCSDS will help support the Lung Cancer Screening Programme (LCSP) to achieve its aim of dramatically improving the early diagnosis of lung cancer, reducing premature deaths from the disease and ensuring the service reaches people across the country with the highest need.

This patient level data set involves the submission of data items relating to the participant, their referral(s), invitations to scans, the scans themselves and their findings along with onward referral information.

The data set caters for a wide variety of screening providers (including private healthcare providers) using a variety of different systems at the local level. All activity which is completed as part of the LCSP, including activity taking place on sites such as a mobile service in a car park, are included in the data set.

This data set includes both patient-level and management information type data. Data is required for analysis and linkage to other NHS England (NHSE) data sets, such as National Disease Registration Service (NDRS).

The LCS data is patient level, and identifiable on submission to the LCSDS to enable production of data products that facilitate effective linkage with other data sources. This collection is a key component in enabling the effective utilisation of data products to meet a wide range of analytical user needs, and to reduce burden of repeating collection of data across different collections.

Personal identifiable data that is captured includes NHS Number, Person Birth Date and Postcode of Usual Address will be recorded. These data items are essential to facilitate linkage to other NHSE data sets.  Once data is linked, it will be pseudonymised for analytical use. The linked data will also allow important demographic analysis demonstrating the variation in demand for screening services across communities so that more targeted and effective care can be provided.

The LCSDS applies to any person in England between the age of 55 and 74 (or older if they are still being seen within the LCSP, for example for follow up scans). Those participants found to be at higher risk of developing lung cancer are invited for a low dose CT scan, and anyone diagnosed with cancer referred urgently into downstream cancer services. Anyone who is not diagnosed with cancer is either invited back for two-yearly CT scans or nodule surveillance (if a suspicious nodule has been found). Anyone who was found to be at a lower risk will be re-invited at a future date to complete the lung health check again.