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

Overview

Lung Cancer Screening Data Set (LCSDS)

NHS England is putting in place a new way to collect patient data for the Lung Cancer Screening Programme (LCSP). We want your views to help us figure out what data to collect and how best to collect it.

NHS England needs to collect this data for several reasons:

• To look at how well the programme is delivered in different parts of the country, and ensuring a good level of quality for everyone.
• To identify where something might have gone wrong and let affected patients know.
• To support research including finding better ways to provide lung cancer screening.

At present, NHS England only collects aggregate level data, this type of data only tells us simple things like, how many people have been invited to the programme, or how many people have had scans. This doesn't give NHS England enough information to understand where things are working well, and where they need to be improved.

NHS England is proposing to create a new Lung Cancer Screening Data Set (LCSDS) which will be patient level, and will replace the currently collected aggregate data. This will allow the programme to keep a record of each patient journey, to better answer questions and improve the programme in future.

The new data set does not mean collecting more data from patients. A lot of this data is already collected by local systems and we would simply re-use this data. This is known as 'secondary use' which also means the data is being used for something other than personal care.'

The kind of information this data will collect relates to participants in the LCSP, including their referral(s), invitations, scans, and findings.

It is important to note, that the data which we will use, will be pseudonymised. This means, although we will collect things like date of birth, and NHS number, it will not be identifiable as you.

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.

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

The current data that we have, does not make it possible for us to understand if there are particular communities that the screening is not reaching, or the pathway that patients take.

We would now like you to provide your feedback from a patient perspective before v1.0 is finalised.

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 four weeks until 30 September 2025.