Cancer Alliance access to National Cancer Waiting Times Monitoring Data Set (NCWTMDS) from the Cancer Wait Times (CWT) System

Improvements for Cancer patients:

In 2015, the independent Cancer Taskforce set out an ambitious vision for improving services, care and outcomes for everyone with Cancer: fewer people getting Cancer, more people surviving Cancer, more people having a good experience of their treatment and care, whoever they are and wherever they live, and more people being supported to live as well as possible after treatment has finished. In 2019, the NHS Long Term Plan was published and it aims to improve how we diagnose and treat cancer. The plan included cancer care as one of its clinical priorities and aimed to boost cancer survival rates by focusing on early diagnosis. The plan set new targets that, by 2028, the proportion of cancers diagnosed at stages 1 and 2 will rise to 75% of cancer patients. Further, an extra 55,000 people each year will survive for 5 years or more following their cancer diagnosis.

Cancer Alliances:

Cancer Alliances have a crucial role to play by being the cancer arms of their ICSs and being the leaders for cancer within their ICB and ICS footprint. Their role is to lead the planning and delivery of the Long-Term Plan ambitions for cancer for their populations, to provide system oversight and co-ordination for cancer services and to oversee the delivery of critical programmes of work within that footprint. They do this by:

• Collaborating with partners (ICSs, commissioners and providers) to provide system level oversight and co-ordination to deliver the operational standards for cancer and the Long Term plan ambitions across their cancer system;

• Deploying service development funding in a way that supports their whole population, and which complements baseline investment so that it maximises the impact on improving cancer outcomes;

• Providing clinical leadership for cancer services across their area to ensure the delivery of a consistently high level of service to patients and to drive the rapid adoption of new approaches; and

• Working as part of the NHS Cancer Programme to share best practice and solutions, and to provide peer support to other Alliance teams.

Cancer Alliance boundaries encompass the range of providers that a cancer patient will typically use. This gives them an opportunity to organise services across organisation boundaries – reducing variation and inequalities, and overall benefitting patients

Cancer Wait Times (CWT) system:

The Cancer Wait Times (CWT) system collects and validates the National Cancer Waiting Times Monitoring Data Set (NCWTMDS), allowing performance to be measured against operational Cancer standards. Data is validated and records merged to the same pathway to cover the period from referral to first definitive treatment for Cancer and any additional subsequent treatments.

The CWT system then determines whether the operational standard(s) that apply were met or not for the patient and the accountable provider(s). The CWT system holds NCWTMDS in a series of pre-aggregated static reports. These reports are available monthly and quarterly data (aligned with the National Statistics for Cancer Waiting Times published by NHS England). Users can query the CWT system to generate reports to feedback on the progress towards meeting these targets.

Cambridgeshire and Peterborough ICB will directly access the Cancer Waiting Times System on behalf of The East of England Cancer Alliance.

The East of England Cancer Alliance is hosted by Cambridgeshire and Peterborough ICB works with health organisations across the East of England region including the acute providers and ICB's listed below and covers a population of more than six million.

NHS Cambridge and Peterborough ICB works with health organisations across Cambridge and Peterborough including 23 acute providers and 6 ICBs.

Acute Providers:

Basildon and Thurrock University Hospital Trust

Bedford Hospital

Cambridge University Hospital

Colchester Hospital

East and North Herts NHS Trust

Hinchingbrooke Health Care Trust

Ipswich Hospital

James Paget University Hospital Trust

Luton and Dunstable University Trust

Mid Essex Hospital

Norfolk and Norwich University Hospital

Papworth Hospital

Peterborough and Stamford Hospital

Southend University Hospital

Queen Elizabeth Hospital Kings Lynn

The Princess Alexandra Hospital

West Herts Hospital

West Suffolk Hospital

Milton Keynes University Hospital

Bedfordshire Hospital Trust

East Suffolk and North East Essex Foundation Trust

Mid and South Essex Trust

North West Anglia Foundation Trust

ICBs

• NHS Mid and South Essex Integrated Care Board

• NHS Bedfordshire, Luton and Milton Keynes Integrated Care Board

• NHS Cambridgeshire and Peterborough Integrated Care Board

• NHS Hertfordshire and West Essex Integrated Care Board

• NHS Suffolk And North East Essex Integrated Care Board

• NHS Norfolk and Waveney Integrated Care Board

Data access:

The CWT system provides one organisation (the lead organisation) representing each Cancer Alliance, with access to the following;

a) Aggregate reports (which may include unsuppressed small numbers)

b) Pseudonymised record level data - users can directly download this data from the CWT system

c) I-View Plus tool

Lead organisations will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' ICB of responsibility. This Cancer Alliance is limited to Cambridge and Peterborough Cancer Patients. CCGs no longer exist in statute, but NHS England use the CCG field as the geographical variable to split the CWT extracts that are sent to Cancer Alliances.

A) Aggregate reports including small numbers

Aggregate data is available in the form of reports at Provider (Trust) and Integrated Care Board (ICB) level.

Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations.

Investigating breaches

Lead organisations routinely monitor performance and standards using the CWT system, particularly in relation to breaches of the 62 day wait target. Due to the large number of potential Trust/ICB combinations, breach counts could result in small numbers as in some cases there are less than 6 breaches in a whole year. Given that financial penalties are linked to target breaches counts must accurately reflect the true percentage without suppression.

Mitigating risk of re-identification

Risk of disclosure is minimised as the dataset does not include patient demographics (increasing risk of re-identification) that may allow users to identify an individual e.g. there are no age, ethnic categories or geographic breakdowns based on patient postcode.

Additionally, the aggregation categories are such that the data is not at a lesser granular level e.g. the source NCWTMDS data collects information at ICD diagnosis code level, but the CWT system aggregates at tumour group level – e.g. Head & Neck, Upper GI, lower GI, Breast etc.

B) Pseudonymised record level extracts

Lead organisations will access record level pseudonymised data which includes the system generated pseudo CWT patient ID.

Any record level data extracted from the system will not be processed outside of the authorised users of the system.

C) i-View Plus

iView Plus uses cube functionality to allow lead organisations to produce graphs, charts and tabulations from the data through the construction of queries. The data in iView plus is split by operational standard being measured and can then be analysed against a range of dimensions collected in the data and measures such as count, percentage and median. The outputs of iView Plus are aggregate, and no record level data can be obtained, however some queries may result in small numbers and these currently have limited disclosure control applied, see A) for further explanation.

iView Plus holds published data, the lowest organisational granularity is trust level, data can also be aggregated to ICB level and other health hierarchies.

Lead organisations will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements.

Lead organisations use of the data will fall into two separate categories, each requiring different levels of suppression, and onward sharing both within the Cancer Alliance and with wider NHS stakeholders;

Purpose One - Aggregate local reports

Generation of routine Cancer Waiting Times reports at Provider (Trust) or ICB level. Lead organisations will access a summary of the totals for the Providers (Trust) and ICBs that are treating cancer patients where they have a commissioning responsibility for that patient (based on the ICB they are aligned to). This analysis would then be shared with the providers and commissioners and used to inform service improvement by providing benchmarked comparable data. The format of this report would be in a tabulated or graphical form (i.e. not record level) but may contain small numbers. An example of where small numbers would not be suppressed would be in relation to cases of breaches against a standard where small numbers would be essential to ensure the report is meaningful.

Examples of this type of analysis include:

a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and ICBs across the geography

b. Analysis of Cancer Waiting Times performance by treatment modality

c. Grouping length of waits for standards

d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays

e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)

f. Analysis of flows of patients including analysis by provider trust site

g. Reviewing waits between surgery and radiotherapy for Head and Neck Cancer patients with a maximum recommended wait of 6 weeks

h. Reviewing routes to diagnosis of patients

i. Quantifying treatment volumes by provider organisation including analysis treatment rates

Purpose Two - Sharing of record level data (including free text breach reasons) with providers and commissioners responsible for direct patient care for that patient. This will be for local audit purposes.

The two broad purposes for this would be:

1) To support audit work

2) Investigate individual outliers to the national standards

Pathway analysis will be undertaken, identifying trends in reasons for breaches. The analysis will inform system wide pathway improvements and compliance to the national standards. Examples of potential changes to achieve this could be to support trusts in additional resources and processes and also to facilitate discuss between trusts for example in reaching agreement for diagnostics between trusts.

Examples of the types of reasons for this include;

a. Patients waiting excessively long period of time to seen of received treatment

b. Free text breach reasons identifying areas of concern which require more detail or clarification from provider

c. Identification of 28 day standard exceptions - National guidance states patients who are diagnosed with cancer should be informed face to face, this would highlight numbers of patients who are not told in person by provider

d. Audits to review orphan records which require local providers to review local patients records

Record level data (pseudonymised) will be shared via NHS.net email accounts and access will be controlled by password protecting all files.

Access to the Cancer Wait Times (CWT) System will enable Cancer Alliances to undertake a wide range of locally determined and locally-specific analyses to support the Long-Term Plan ambitions for early diagnosis and survival and the previous Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer.

Only the lead organisation Cambridgeshire and Peterborough ICB will directly access or download extracts from the Cancer Waiting Times system. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs - the East of England Cancer Alliance.

The CWT system is hosted by NHS England, access to and usage of the system is fully auditable. Users must comply with the use of the data as specified in this agreement. The CWT system complies with the requirements of NHS England Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality.

Access to the CWT system will be granted to individual users only when a valid Data Usage Certificate (DUC) form is submitted to NHS England via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS England.

Microsoft Limited supply Cloud Services for Cambridgeshire and Peterborough ICB and NHS North of England Commissioning Support Unit and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data.

Approved users will log into the system via a secure connection and will use a Single Sign-On (users are prompted to create a unique username and password).

Cambridgeshire and Peterborough ICB users will access:

a) Aggregate reports (which may include unsuppressed small numbers)

b) Pseudonymised record level data - users can directly download this data from the CWT system

c) I-View Plus tool (aggregated - access to produce graphs, charts/tabulations from the data through the construction of queries). This will give users access to run bespoke analysis on pre-defined measures and dimensions. It delivers the same data that is available through the reports and record level downloads (i.e. it will not contain patient identifiable data).

Any record level data extracted from the system will not be processed outside of the Cambridgeshire and Peterborough ICB unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed.

Users are not permitted to upload data into the system.

Data will only be available for the Providers (Trust) and ICBs that are treating cancer patients where they have a commissioning responsibility for that patient (based on the ICB that this Cancer Alliance is aligned to).

The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement.

Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers.

Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts.

As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/regional bodies including NHS Improvement and NHS England. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS England to access Cancer Waiting Times data.

Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance.

Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the Data Controller in fulfilment of their public health function.

The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data.

Typical uses will include:

1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways

a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and ICBs.

b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions

c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards (e.g., activity and breach share by first seen trust and treatment trust, and by tumour site)

d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays.

e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)

f. Analysis of flows of patients including analysis by provider trust site

g. Outlier identification including exceptionally long waits to inform individual queries to providers

2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patients’ outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.

Outputs fall into the following categories:

1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways

a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and ICBs.

b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions

c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards

d. Analysis of derived breach reason fields to identify trends in reasons for delays.

e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)

f. Analysis of flows of patients including analysis by provider trust site

g. Analysis of flows of patients across geography including analysis by tumour groups where specialist treatments are required only to be delivered by designated centres, aligning to Improving Outcome Guidance (NICE IOG)

h. Outlier identification including exceptionally long waits to inform individual queries to providers

2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patients outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.

The overarching aim of all future analysis/outputs is to inform priorities and potential investment to improve Cancer pathways including reducing Cancer incidence and mortality, improving Cancer survival, improving patient experience, improving service efficiency and meeting national constitution standards relating to Cancer patients.

1) Benefits type: Supporting delivery of CWT standards

The Cancer Waiting Times standards are key operational standards for the NHS, which aim to reduce the waits for diagnosis and treatment for Cancer patients, which will support improvements to survival rates and improve patient experience. These include the 3 combined operational standards which came into existence in October 2023 (28 day Faster Diagnosis, 31 day Treatment and 62 day Standards).

A key enabler to achieve these standards, and thus improve survival and patient experience is the role of Cancer Alliances locally to work with providers and commissioners to improve patient pathways. Access to the Cancer Waiting Times data as detailed in the above will enable Cancer Alliances to have informed discussions and allocate resources optimally to improve performance against these standards. It will also enable Cancer Alliances to work with local providers and commissioners to identify outliers against the standards and mitigate the risk of similar delays for other patients.

Improvement would be expected on an on-going basis with the combined standards, based on the previous nine standards, being in place since October 2023:

8-day Faster Diagnosis Standard (75%)

31-day decision to treat to treatment standard (96%)

62-day referral to treatment standard (85%)

2) Benefits type: Improvements beyond constitutional standards

This access and resulting analysis will enable Cancer Alliances to undertake local analysis beyond the Cancer Waiting times operational standards to support improvements to Cancer patients pathways beyond those already achieved by improving performance against standard set. This could include reviewing times between treatments, or treatment rates.

The overall aim of this type of additional analysis would be to support improvements to Cancer patients survival and experience. The NHS Long-Term plan built on the previous Cancer Taskforce recommendations relating to survival and early diagnosis, and has set out ambitions to improve early diagnosis (patients stage 1 or 2) to 75% and that an extra 55,000 people each year will survive for 5 years or more following their cancer diagnosis by 2028. For both of these improvements to the diagnostic and treatment pathways are key and require Cancer Alliances to be able to analyse the Cancer Waiting Times dataset to identify sub-optimum pathways and resulting improvements.

CWT data has not been accessed, therefore there are no benefits to report