Part of Tobacco prevention programme patient level data collection guidance
Background
Data collection purpose
Individual person level data is required to monitor activity and outcomes and to identify the anticipated impact on addressing health inequalities. The capture of this data is also required to inform the evaluation of this programme.
The data that is collected will be used to:
- develop aggregated analysis of the quantitative metrics to demonstrate progress across each of the sites, providing insights and recommendations
- provide regular cross-site reporting to the national team, to provide assurance and help identify good practice to enable replicability
Legal basis and processing
Information governance approval was achieved by an application via NHS England’s Data Standards Assurance Service. The collection was originally approved at the October 2021 Data Alliance Partnership Board with amendments confirmed at the January 2023 board. The Department of Health and Social Care legal Directions, the Data Provision Notice and Transparency Notice are also published online by NHS England.
Formal individual patient consent will not be required as use of the data is covered by the same rules as other Secondary Uses Data. Secondary use of data in the NHS is when patient data is not used for direct care but for other secondary purposes such as commissioning, risk stratification, financial and national clinical audit, healthcare management and planning, research and public health surveillance.
Trusts in scope
All NHS care providers in England, who deliver tobacco dependence treatment services, as set out in the NHS Long-Term Plan (LTP)1are in scope.
This includes:
- NHS funded or commissioned care providers delivering tobacco dependence treatment services in England across community and primary care and also secondary care, including mental health services, maternity, and inpatient services
- GPs and primary care providers, who have been commissioned to deliver tobacco dependent treatment services including mental health and early implementer sites
- Independent providers, who have been commissioned by the NHS, to provide tobacco dependence treatment services across the above settings
For sites that provide inpatient (physical and mental health services), maternity and outpatient services, this is likely to be within a single Trust. However, there are circumstances where a service could be provided across a number of providers, for example, specialist community mental health services. Where this happens, all providers that are commissioned to deliver services are in scope.
NHS England are working to deliver a national digital tobacco treatment service in 2024/25. Initially, this will be available to NHS staff, but there are plans for expansion. This service is intended to be in scope, but reporting will be via partner organisations contracted by NHS England and not the responsibility of local commissioners.
Where there are multiple services provided within a trust and all of these should be reported in a single submission each month for example maternity and inpatients together.
In line with the LTP commitments, all NHS services which meet the required criteria need to provide and deliver services. It is the responsibility of the commissioner to ensure that this happens and they also have accountability for ensuring that the providers submit the required data. Mostly, this will be NHS trusts across a range of settings, however, if a non-NHS trust or non-NHS provider is commissioned to deliver these services, then data still needs to be submitted and it is the commissioners’ responsibility2 to ensure that this occurs.
For the purposes of this document the term “in-house” will be used as a catch-all for the services described in the paragraph above. This approach has also been taken in the Data Specification and other supporting documentation.
Submissions
Data should be collated in the template provided and submitted to NHS England, via the Strategic Data Collection Service (SDCS) using this submission portal. Trusts may need to set up local Data Sharing Agreements if they are working in conjunction with local authorities or community pharmacies to deliver tobacco dependence treatment services to ensure that individual person-level data is available for submission.
For inpatient, maternity and outpatient services, submissions are required at trust level: i.e. one submission per trust (including data from all services and sites within that trust). Trust organisational codes should be inputted in the relevant section of the submission template. One submission is required per month during the reporting window, which is open between the 2nd and 15th working days the month. Submissions are required one month in arrears, i.e. data for April will be submitted in the June reporting window.
For NHS Specialist Community Mental Health services delivered in the community, monthly submissions are required (a month in areas as per inpatient, maternity and outpatient services). Submission can, however, be made by the individual service providers or from a single organisation such as the ICB (assuming appropriate data sharing agreements are in place). See Additional guidance for NHS specialist community mental health tobacco dependence treatment services.
Digital: All data for the national Digital Tobacco Treatment Service (DTTS) will be submitted centrally, in one submission, by the Commissioning Support Unit (CSU) responsible for the administration of the intervention hub. The submissions to the Tobacco Dependence data collection are in additional to and separate from the data required for the service’s Master DataSet (MDS). This service is intended to go live in late 2024/25.
It is important to use the template made available within the SDCS environment each month to ensure that the correct version is utilised (security and other updates are made between submission windows).
If the submissions deadline is missed, trusts can contact NHS England and request an extension at [email protected]. Only submit data via the template and the secure portal.
After the patients’ data are submitted to NHS England they are transferred to the DSCRO (Arden and Gem CSU) where pseudonymisation occurs and all patient identifiable information is removed from the dataset (similar to how SUS data is processed). At this point, the dataset will be uploaded NHS England’s data warehousing platforms (i.e. the the Unified Data Access Layer (UDAL) and the National Data Platform (Foundry). Each of these are highly secure data storage and analysis environments within NHS England. Within the UDAL/National Data Platform, the data can be linked to other pseudonymised datasets including SUS. This will enhance the dataset, improve data quality, allow analysis of patient interaction with various parts of the health system and provide insights on their health outcomes from different episodes of care
The NHS England Prevention Programme will only have access to pseudonymised person level data. The pseudonymised data will be made available in the form of aggregate level dashboards and ad‑hoc reports that will support regions and systems to manage performance, identify/promote good practice, explore inequalities and determine the effectiveness of the interventions. Analyses will also inform discussions with providers of the programme (i.e. trust management and clinicians) to ensure that it is delivered as specified and to continually explore potential improvements.
Patient cohorts in scope
The programme is primarily focussed on adult services and specifically targets individuals aged 16 years or older. However, it is likely that younger smokers will also access these services, particularly mental health and potentially maternity services. Although data for patients under 16 years should not be reported in this submission, it is expected that age-appropriate tobacco dependence treatments should still be offered, including if patients present to a paediatric service.
Where services are offered to children, the scope of the LTP commitments does not include offering support to parents or other members of the household. Local systems may want to consider extending services or agreeing local pathways with Local Authority Stop Smoking Services (SSS) to facilitate children returning to a smoke-free home.
Data quality
It is important that submissions are of high quality so that the data provides a comprehensive and accurate representation of patient activity and outcomes. To improve data quality, the submission templates contain data validation algorithms which highlight probable issues with the data entered. There are two main types of validation types in the templates:
Errors
Errors which unless corrected will prevent the submission of the data for that month.
Examples of errors include: missing provider codes, missing NHS numbers or when a cell value hasn’t been chosen from the drop-down list of options provided in a mandatory field.
Warnings
Warnings which advise submitters to investigate and check the data, but which will not prevent the submission of the data.
Examples of warnings include:
- dates of birth outside a given range
- missing service data
- conflicting dates
- unrecognised postcodes
- no aggregate data
More information on the specific validation warnings and errors is contained in the submission template on the SDCS portal.
It is recognised that with a new collection it may take some time to resolve all local data quality issues. Therefore, the approach with this collection is to begin by only rejecting a file/submission where there are serious data errors. This should enable submitters to provide datasets as complete as possible with all relevant patient records included. However, over time the validation criteria will be tightened and issues which initially generated only warnings will be switched to errors and submissions rejected unless corrected.
Additional resources
The NHSE Prevention programme has a dedicated FutureNHS site that hosts a number of useful resources including: data specification, a Frequently Asked Questions (FAQs) document, an SDCS portal walk through, delivery model specifications, delivery model specifications, and a copy of this guidance.
The FutureNHS Collaboration Platform is a collaboration platform from the NHS that supports people working in health and social care. Registration is free. Once registered with the site, users will also need to request access to the Prevention Programme workspace and may need to wait a short while for manual access approval to be granted. This will be in the form of an email invite with a prompt to activate your access to the workspace.
If these resources do not provide the information required, the national programme team can be contacted at: [email protected] to respond to queries about tobacco dependence policy or about the patient-level data collection specification or guidance.
If your query relates either to a technical question about submitting the patient-level data collection via the SDCS portal or to the reporting window and extensions, please contact the National Service Desk
Last edited: 12 December 2024 12:50 pm