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

South Yorkshire & Bassetlaw Cancer Alliance · Network

Expired The latest version ended on 11 August 2023. The September 2026 register still lists the agreement, but its term has passed.

Reference: DARS-NIC-204562-J5W0T
Latest version: v2.2
Term of latest version: 12 August 2020 to 11 August 2023
Start date: 2 January 2019
Data controller: Sole Data Controller
Commercial purposes: No
Sublicensing: No
Files released to date: 0

Data controllers

NHS South Yorkshire ICB

Why the data was released

Objective for processing

NHS Doncaster Clinical Commissioning Group (CCG) Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by NHS Doncaster CCG. NHS Doncaster CCG is therefore the lead organisation, and the data controller who processes data. In this Agreement, therefore, all references to accessing the data refer to the legal entity - NHS Doncaster CCG.

This Agreement will permit NHS England to share aggregate Cancer Waiting Times (CWT) data containing small numbers with NHS Doncaster CCG Cancer Alliance. This aggregate unsuppressed data can only be shared while both this Agreement and the Data Sharing Agreement for the relevant Cancer Alliance remains active, and where the Cancer Alliance Agreement contains appropriate wording to cover this data sharing. If NHS Doncaster CCG Cancer Alliance's Data Sharing Agreement expires or otherwise ends, then NHS England must ensure any flow of aggregate unsuppressed data to NHS Doncaster CCG Cancer Alliance is halted.

The outputs shared with NHS Doncaster CCG Cancer Alliances are aggregate data reports which are essential to Cancer Alliances to enable analyses to be carried out and to understand local performance, both of individual providers and of the system in general. This analysis has to be undertaken at the most appropriate level for action to be taken and performance to be benchmarked; thus allowing patients to experience improvements to the system. For Cancer, this is specific tumour site level which is only possible with unsuppressed data. Introducing small number suppression would result in these reports having no practical use and leave Cancer Alliances without a way in which they can understand variation in performance between providers and improve the system. NHS Doncaster CCG Cancer Alliance already have access to unsuppressed data which is held by NHS Digital.

Currently, the CWT national system does not provide full coverage of the data requested by NHS Doncaster CCG Cancer Alliances in their Data Sharing Agreements with NHS Digital. Only a limited amount of aggregate reports and record level data is available directly in the CWT system. NHS England are working with the development team to rectify this issue but based on competing policy priorities and finite financial resources it is likely that this development will not be fully realised. Therefore, NHS England’s Cancer Alliance, Data, Evidence and Analysis Service (CADEAS) will be required to provide NHS Doncaster CCG Alliances with aggregate data for monthly and quarterly performance management and monitoring use within the NHS. This may include small numbers.

LEGAL BASIS FOR PROCESSING DATA:

The GDPR legal basis for processing is:

Article 6(1)(e) Task in the public interest:

The CCG is a public authority as defined by The Data Protection Act 2018 s7(1)(a) in line with the definitions contained within Part 1, section 3 (1)(a)(i) the Freedom of Information Act 2000”.

‘Public Task’: Clinical Commissioning Groups have a duty to commission certain specified health service under Section 3(1) of the NHS Act 2006 amended by Health and Social Care Act Section 13. CCGs must arrange for the provision of certain specified health service to such extent as it considers necessary to meet the reasonable requirements of the persons for whom it has responsibility.

Article 9(2)(h)

Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3.

As part of the standard Data Access Request Service application process:

- the applicant’s technical and organisational measures to safeguard the data have been assessed and meets NHS Digital’s acceptance criteria;

- the requested data has been assessed as proportionate to the aim pursued;

- respect to the essence of the right to data protection has been assessed (e.g. security assurance, data retention, controls and processing activities, etc.);

- measures to protect the rights and freedoms of data subjects have been assessed including transparency (fair processing) publishing subject’s rights to withdraw consent and/or have their data erased or rectified, etc.

IMPROVEMENTS FOR CANCER PATIENTS

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.

CANCER ALLIANCES

Cancer Alliances, which have been set up across England, are key to driving the change needed across the country to achieve the Taskforce’s vision. Bringing together local clinical and managerial leaders from providers and commissioners who represent the whole Cancer pathway, Cancer Alliances provide the opportunity for a different way of working to improve and transform Cancer services. Cancer Alliance partners will take a whole population, whole pathway approach to improving outcomes across their geographical ‘footprints’, building on their relevant Sustainability and Transformation Plans (STPs). They will bring together influential local decision-makers and be responsible for directing funding to transform services and care across whole pathways, reducing variation in the availability of good care and treatment for all people with Cancer, and delivering continuous improvement and reduction in inequality of experience. They will particularly focus on leading transformations at scale to improve survival, early diagnosis, patient experience and long-term quality of life. Successful delivery will be shown in improvements in ratings in the Clinical Commissioning Group (CCG) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard.

https://www.england.nhs.uk/publication/ccg-iaf-methodology-manual/

CANCER WAITING 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.

SOUTH YORKSHIRE, BASSETLAW AND NORTH DERBYSHIRE CANCER ALLIANCE

Doncaster CCG will directly access the Cancer Waiting Times System for the South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance region, which covers a population of 1.85 million people.

South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance works with health organisations across South Yorkshire, Bassetlaw and North Derbyshire including 5 acute providers and 6 clinical commissioning groups.

Acute Provider:

- Barnsley Hospital NHS Foundation Trust

- Chesterfield Royal Hospital Foundation Trust

- Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust

- The Rotherham NHS Foundation Trust

- Sheffield Teaching Hospitals NHS Foundation Trust

CCGs:

- NHS Barnsley CCG

- NHS Bassetlaw CCG

- NHS Doncaster CCG

- NHS Derby and Derbyshire CCG

- NHS Rotherham CCG

- NHS Sheffield CCG

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

Doncaster CCG will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' CCG of responsibility. This Cancer Alliance is limited to South Yorkshire, Bassetlaw and North Derbyshire Cancer Patients.

A) Aggregate reports including small numbers

Aggregate data is available in the form of reports at Provider (Trust) and Clinical Commissioning Group (CCG) level.

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

Investigating breaches

Doncaster CCG 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/CCG 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

Doncaster CCG 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 CCG level and other health hierarchies.

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

Doncaster CCG's 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 CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG 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 CCGs 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 highlights 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.

Processing activities

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 Cancer Taskforce vision for improving services, care and outcomes for everyone with Cancer.

Only Doncaster Clinical Commissioning Group (CCG) will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the Doncaster CCG servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs.

The CWT system is hosted by NHS Digital, 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 Digital 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 Digital via the lead organisations Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between the lead organisation and NHS Digital.

Approved users will log into the system via an N3 connection and will use a Single Sign-On (users are prompted to create a unique username and password).

Doncaster Clinical Commissioning Group 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 Doncaster Clinical Commissioning Group unless otherwise specified in this agreement.

Users are not permitted to upload data into the system.

Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG 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. The primary method for sharing outputs PDF, MS Excel via NHS NET, as well as developing to Power BI for assigned users through secure access. 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 England, CADEAS, STP and Macmillan. 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 Digital 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 CCGs.

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 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 patient’s 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.

A Cancer Alliance user will be able to access the same data that is possible for the individual component CCG user accesses which forms that alliance. Although the Cancer Alliance user may have access to pseudonymised patient information not related to that of the component CCGs, users should only process and analyse data for which they have a legitimate relationship (as described within Data Minimisation).

Cancer Alliances can access data for Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG the Cancer Alliance is aligned to). This Cancer Alliance is limited to South Yorkshire, Bassetlaw, Derby and Derbyshire (NHS Barnsley CCG, NHS Bassetlaw CCG, NHS Doncaster CCG, NHS Derby and Derbyshire CCG, NHS Rotherham CCG and NHS Sheffield CCG).

Expected output

Outputs fall into the following categories: