[April 2024] | Issue [24]

Welcome to the COSD Newsletter for April 2024. This newsletter has been developed to inform you about the latest COSD news and updates.

Following its full version update and official release, NDRS ran a series of roadshows across England. COSD now moves to the next phase of the rollout (data collection and reporting), and this newsletter will outline the key timelines. If you need additional support, please contact your Regional Liaison Manager and talk about how we can support you.

If you know of any colleagues who would benefit from receiving a copy of the newsletter, please feel free to forward a copy to them. Alternatively get them to subscribe to our mailing list using the link at the bottom of the newsletter, and we will add them for next time.

In This Issue

• What Is The NDRS?
• NDRS Regional Liaison Managers
• NDRS - COSD and Cancer Data Roadshows 2024
• New COSD v10 and COSD Pathology v5 documentation
• Uploading data to API
• Enhanced schema rules
• SNOMED CT training
• TLHC Screening programme
• Narrated training modules

NDRS and Support

What is the NDRS?

The National Disease Registration Service is part of NHS England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.

NDRS includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). 

NDRS uses data provided by patients and collected by the NHS as part of their care and support. NDRS uses this data to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.

NDRS Regional Liaison Managers:

Additional support is available via the NDRS Regional Liaison Managers:

• Eastern: [email protected]
• East Midlands: [email protected]
• London & South East: [email protected]
• Northern & Yorkshire: [email protected]
• North West: [email protected]
• Oxford: [email protected]
• South West: [email protected]
• West Midlands: [email protected]

General enquiries via:

• [email protected]

NDRS - COSD and Cancer Data Roadshows 2024

Once again I wanted to thank everyone who managed to attend the NDRS - COSD and Cancer Data Roadshows across England earlier this year.

The roadshows were a great success with 100 more people attending this year compared with the last set of roadshows in 2020.

The roadshows included presentations about the changes to COSD, information about NDRS and how we use data to drive clinical improvement. In addition, there were also presentations from the NHS England (NHSE); Living With and Beyond Cancer (LWBC) team and Cancer Waiting Times (CWT), as well as Acute Oncology and the National Cancer Audit Collaborating Centre (NATCAN). This built on a similar mix of presentations at the 2020 events, which was appreciated by the delegates attending.

The aim of the roadshows was to improve people’s knowledge of the changes to COSD and cancer data collection in general, but also what NDRS and other key stakeholders do with their data. Emphasising how valued the delegates are and how important their work is, was a key part of the roadshows.

The following are the main headlines from the roadshows:

• 97% of people thought their event was good-to-excellent
• 100% of people thought the roadshow improved their knowledge of cancer data and information
• 95% of people thought the length of the roadshow was about right

There were also many fantastic comments left as well, and I have picked out five here:

• "The presentations were very informative with a lot of interesting and key information. It is helpful to see the outcomes of the data that is collected as part of a cancer services team, and it was positive to see the impact that we make"
• "Excellent roadshow. Very informative and useful and worth the 5 hours of driving! I like that we had presentations on the new changes, but also what areas of work we need to focus on and in particular, excellent the sample of how data can improve clinical improvements"
• "I liked that the presenters engaged the delegates and made us feel like our contributions are truly valid and that our work makes a real difference. A lot of the time we work behind the scenes and don't receive such recognition"
• "Great day and enjoyed the networking with other organisations. Learnt about Lots of useful tools and things I wasn’t aware of! Thank you to everyone who put the time and effort in! Appreciate it! Lovely people!"
• "Thank you for the opportunity to attend, it was a very busy information gathering day. Lots of interest in how the data is used more widely & the team on my table went away inspired by the presentations"

A big thank you to everyone who took the time to return a feedback form following their roadshow.

For those who attended and for those who could not, we have created a COSD Roadshow webpage COSD and cancer data roadshows 2024 - NDRS (digital.nhs.uk) where people can view the main presentations from the day. Many are narrated (to support accessibility) and those which are not, we have got permission to make these available as a pdf to download.

COSD v10 and COSD Pathology v5 documentation

I am delighted to inform you that NHS England, on the delegated authority of the Secretary of State for Health and Social Care, approved the changes to COSD v10 and COSD Pathology v5.0. These were published on the 08 September 2023 and went live for data collection by Trusts on the 01 April 2024.

All documentation can be found on the following websites:

NHS England’s ISN website http://digital.nhs.uk/isce/publication/dapb1521

• ISN Notice
• Specification
• Implementation Guide
• Change Request

NDRS new website COSD v10.0 downloads - NDRS (digital.nhs.uk)

• COSD v10.2.0 data set
• COSD v10.2.0 user guide
• COSD v10 technical guide
• COSD Pathology v5.1.0 data set
• COSD pathology v5.1.0 user guide
• COSD Pathology v5 technical guide

As with all documentation, if there are any updates or changes we will always update the user guides etc. accordingly. Please therefore be mindful to regularly check the website, to ensure you are reviewing and using the most up-to-date version.

We strongly urge Trusts to work with your system supplier or IT team at the earliest available time to programme in the change/upgrade process, so that your Trust does not become ‘Non-Compliant’ with the mandated standard.

This is an important notice for all Trust Cancer, IT teams and System Suppliers

There has been an updated schema pack for both COSD v10 and COSD Pathology v5, which is available on the Technology Reference Update Distribution (TRUD) website https://isd.digital.nhs.uk/trud/user/guest/group/0/home as follows:

• COSD_v10-2-0 Schema pack
• COSD_Pathology_v5-1-1 Schema pack

Due to the late changes to the schema packs, the Head of Cancer Datasets has had conversations with the chair of the COSD Governance Board and the NDRS Data Projects (Senior Leadership Team) and it has been agreed to delay the full implementation date from 01 July 24 to the 01 September 2024.

This will allow additional time for roll-out of new versions, as we appreciate that suppliers with multiple clients cannot do this all-in-one day. We hope that this will also relieve some unforeseen pressure on Trusts implementing new version upgrades.

NDRS are committed to supporting Trusts and system suppliers and if you have any concerns about implementation at your Trust, please speak in the first instance to your regional NDRS Liaison Manager.

Upload, Validation and Reporting API for COSD Data Submissions

The Data Liaison Team continue to work with each Trust (as required), to support COSD data submissions via the API portal. We provide API portal accounts, guidance and test runs, so that Trusts are able to make a successful upload of their data submissions.

The portal not only improves the security of data transfer and the accuracy of data submitted but also provides improved validation and reporting for Trust use, including instant feedback metrics on the uploaded data and patient level reports indicating incomplete stage.

Enhanced Schema Rules

Once again, I thought it would be useful to re-run this article for you... For COSD v10 and COSD Pathology v5, NDRS will also be strictly applying the schema, thus for example: where there is a pattern, this must be applied correctly, for example (but not limited to):

• all date formats
• topography codes and ICD codes
• only enumerations listed with defined codes will be acceptable
• min / max lengths in fields

These errors will result in the whole file being rejected not only those records which do not meet the schema spec. An error report will be made available for Trusts to correct their errors, but it would be better if these were highlighted by the system supplier export and correctly mapped to the schema to prevent incorrect data being attempted to be uploaded. It would be expected that all Trusts would resubmit with a fully compliant file within 5 working days.

This is a major change to the way we have been accepting data to-date, but the schema is there to provide improved accuracy and data quality, and our developers and registration teams are spending a huge amount of time dealing with incorrect data submissions.

This was discussed at the COSD Roadshows in one of the presentations by the Head of Cancer Datasets, and your help and support with this is very much appreciated.

SNOMED CT Training Update

Following the COSD roadshow events, the NHS England SNOMED Implementation team are planning to provide an introduction to SNOMED CT session, including a chance to ask questions, over Microsoft Teams.

Please register your interest in attending here. If you would like to reach out to the team please contact [email protected].

It is important that we get enough people to make the Teams event viable. I know there was a lot of interest at the roadshows, so please do register and I look forward to attending the session myself too. For those that have registered, you will be informed as soon as there is a date available.

TLHC Screening Programme

In order to continue to align the major cancer reporting data sets and to reduce the burden of data collection on staff, please can all Targeted Lung Health Check (THLC) referrals be recorded as a National Screening Programme, as per the advice provided by NHS England and the Cancer Waiting Times (CWT) team on this webpage.

From 1 April 2024, providers should record referrals from the Targeted Lung Health Checks (TLHC) Programme using the following fields in COSD:

• On a Primary Cancer Pathway: COSD field [CR1600 - Source of Referral for Out-Patients] selecting '17 - Referral from a National Screening Programme'
• On a Non Primary Cancer Pathway: COSD field [CR0300 - Source of Referral for Non Primary Cancer Pathway] selecting '17 - Referral from a National Screening Programme'

In addition, please can the new TLHC data item within the Lung section also be completed [LU10600 - Lung Health Check Indication], this will allow for the cross reference of data by analysts and the National Lung Cancer Audit (NLCA) at a later date.

Additional advice around recording this pathway through CWT, is clearly laid out in the above link. The move to align both data collections should prevent confusion and mixed data returns.

Narrated Training Modules Now Available for COSD Data

A series of bite-sized narrated training modules are available, both as narrated slideshows and PDFs, on the new NDRS website. These modules are aimed at MDT co-ordinators and other cancer administration staff.

Generic modules, which are perfect for staff who are new to cancer, cover the fundamentals of cancer data including:

• Cancer System Background Information
• What is Cancer?
• Diagnosing Cancer.

The next stage modules include COSD-specific information, covering:

• Recording a Diagnosis
• Key Performance Indicators (which covers TNM Stage, Performance Status and CNS indication code)
• plus, one on FIGO Staging for Gynaecology.

Additionally, 26 site-specific modules have so far been generated for different cancers, to give administrators an insight into the specialised information and language as used by the clinical teams. There are more currently in preparation and will be published over the coming months.

Training already published includes cross-group modules for Neuroendocrine neoplasms and CTYA tumours. Where possible, guidance has been included on how to record this information.