About the Lung Cancer Screening Data Set

NHS England is in the process of planning the development of a new patient level data collection to support the national Lung Cancer Screening programme. 

The Lung Cancer Screening Data Set (LCSDS) is expected to be a patient level, output based, secondary uses data set which will largely replace the existing aggregate data collection. 

As a secondary uses data set it will re-use clinical and operational data for purposes other than direct patient care, for example, commissioning, service improvement and service design. It defines the data items, definitions and associated value sets extracted or derived from local information systems.

The LCSDS aims to improve screening attendance and coverage, and to support expansion against realistic goals. It is expected that the Lung Cancer Screening Programme (LCSP) sites will be submitting the data.

The data set will cater for a wide variety of screening providers (including private healthcare providers) using 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 will be included in the data set.

This data set will include both patient-level and management information type data. Data is required for analysis and linkage to National Disease Registration Service (NDRS) data sets is also needed. 

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. 

The LCSP invites all current or former smokers between the age of 55 and 74 to attend a risk assessment appointment (lung health check). If they are over the risk threshold, they will be invited for a low-dose CT scan to check their lungs for signs of lung cancer. The person might be referred to a lung cancer clinic, invited for nodule surveillance scanning, or if nothing of concern is found, they will be re-invited every 2 years for incident screening rounds.

Find out more information about the Lung Cancer Screening Programme.

The following areas are also out of scope and should consequently not be included within LCSDS:

• imaging activity not managed on the Radiology information system (RIS) (that is, where managed in other local or provider systems that are separate to the RIS such as screening programmes, for example, breast screening or mobile cardiac ultrasound activity
• imaging activity performed on the deceased, such as that carried out for post-mortem purposes     
• primary care dental x-rays

Full details of in scope and out of scope services for LCSDS v1.0 can be found within the LCSDS Requirements Specification document which will be available on the LCSDS information standards web page at a later date.

Patient data is not only vital for managing an individual’s care, it also plays an important role in other ways: planning health services, improving diagnosis and treatment and evaluating the effectiveness of policy. These ‘secondary uses’ of data offer significant opportunities to improve care and services, especially for a new programme such as the Lung Cancer Screening Programme (LCSP), which is using data and knowledge from initial roll-out to inform future expansion and development of this data set. 

A secondary uses, patient level dataset is required to continually monitor safety, assess the effectiveness of this healthcare programme, ensure it is meeting the screening needs of the eligible population and that the quality assurance standards are being met.

Current guidance available for LCSDS v1.0 includes the draft LCSDS Data Model and draft LCSDS Technical Output Specification. This documentation can be found on the Implementation Tools and Guidance page.

To contact the team with any general questions, email [email protected].