Lung Cancer Screening Data Set (LCSDS) Version 1.0 Public Consultation Questionnaire

Overview

Lung Cancer Screening Data Set (LCSDS)

NHS England are in the process of planning the development of a new patient level data collection to support the national Lung Cancer Screening Programme. We are actively seeking the views of others as part of this consultation survey to inform and aid us with our development.

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. This data set will involve the submission of data items relating to the patient, their referral(s), invitations to carry out a lung health check, invitations to scans, the scans themselves and their findings along with onward referral information.

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.

Data Alliance Partnership Board 

The Data Alliance Partnership Board (DAPB) has received a request to create a new information standard, DAPB4124.  As part of the development and assurance process, this consultation seeks feedback on the proposed changes.

Further information on the DAPB process can be found here

Version 1.0 of the LCSDS

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.

Please note that you don't have to complete all of the questions in one go; it is possible to save your responses for later completion.

One response should be submitted per organisation, this can be a collective response, with input gathered from multiple teams in one submission.

If you require the survey in an alternative format, please contact us via e-mail at england.dataset.development@nhs.net

Why your views matter

As part of the application to obtain approval from the Data Alliance Partnership Board (DAPB), we are asking for feedback on our proposals for LCSDS Version 1.0.

The current data set is aggregate level data, and as this was not a patient level dataset, there was no way of assessing for example cancers diagnosed by patient characteristics to evaluate who the programme is serving, or of assessing the treatment modality and downstream services those diagnosed with cancer access.

We would now like any interested parties to participate and provide feedback with regard to the technical solution, before version 1.0 is finalised. Interested parties can include all those who may be impacted by this such as, lung cancer screening providers and their system suppliers, clinicians, research organisations, charities and members of the public.

Information on the first consultation Expert Reference Group (ERG) that took place on 14 July 2025 will made available in due course on the NHS England LCSDS webpages, along with all future ERG's. If you would like a copy of the slides following the last ERG meeting, please don't hesitate to contact us at england.dataset.development@nhs.net

Consultation feedback will be reported back to the DAPB before publication of an Information Standards Notice (ISN) is agreed. Further information on the Information Standards, can be found here.

This consultation will run for approximately six weeks until 14 September 2025.

The following supporting documentation is available to view in the 'Related Documents' information section below:

• Draft Technical Output Specification (TOS)
• Draft Data Model

The draft TOS includes data item definitions and information such as whether data items are Mandatory, Required, Optional or Pilot. Respondents are advised to read the TOS as part of considering their response to this consultation.