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

This agreement is for the East Midland Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by Nottingham University Hospitals NHS Trust. Nottingham University Hospitals NHS Trust 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 - Nottingham University Hospitals NHS Trust.

Improvements for Cancer patients

An Independent National Cancer Advisory Group has been established to advise and assess on progress of implementation of Achieving World Class Cancer Outcomes (AWCCO). The group is independent of Government, the NHS Arms Length Bodies and the National Cancer Transformation Board. The Terms of Reference for the Group are available.

The Independent National Cancer Advisory Group 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.

The legal basis to hold and use personal data is covered under the General Data Protection Regulation: article 6(1)(e), where Processing of this data is necessary to understand which trusts in the region are meeting the necessary cancer wait time’s standard and for the Cancer Alliance to work with failing trusts to improve wait times to improve patient experiences and outcomes; and Article 9(2)(j) where Processing this data is necessary for archiving statistical purposes to analyse trends in cancer wait times in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This agreement is for the East Midland Cancer Alliance to access Cancer Waiting Times data. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by Nottingham University Hospitals NHS Trust. Nottingham University Hospitals NHS Trust 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 - Nottingham University Hospitals NHS Trust.

Improvements for Cancer patients

An Independent National Cancer Advisory Group has been established to advise and assess on progress of implementation of Achieving World Class Cancer Outcomes (AWCCO). The group is independent of Government, the NHS Arms Length Bodies and the National Cancer Transformation Board. The Terms of Reference for the Group are available.

The Independent National Cancer Advisory Group 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.

Processing of this data is necessary to understand which trusts in the region are meeting the necessary cancer wait time’s standard and for the Cancer Alliance to work with failing trusts to improve wait times to improve patient experiences and outcomes (6(1)e).

Processing this data is necessary for archiving statistical purposes to analyse trends in cancer wait times in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. 9(2)j)

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. The Taskforce is an independent body that has been established to advise and assess on progress of implementation of Achieving World Class Cancer Outcomes (AWCCO) . 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 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.

East Midlands Cancer Alliance

Nottingham University Hospitals NHS Trust will directly access the Cancer Waiting Times System for the East Midlands Cancer Alliance region, which covers a population of 4.7 million people.

East Midlands Cancer Alliance works with health organisations across the East Midlands including 8 acute providers and 16 clinical commissioning groups.

Acute Providers

Chesterfield Royal Hospital

Kettering General Hospital

Northampton General Hospital

Nottingham University Hospitals

Sherwood Forest Hospitals

United Lincolnshire Hospitals

University Hospitals of Derby and Burton

University Hospitals of Leicester

CCGs

Corby

Derby and Derbyshire

East Leicestershire and Rutland

Leicester City

Lincolnshire East

Lincolnshire West

Mansfield and Ashfield

Nene

Newark & Sherwood

Nottingham City

Nottingham North and East

Nottingham West

Rushcliffe

South Lincolnshire

South West Lincolnshire

West Leicestershire

Data access

The CWT system provides one organisation (in this case, Nottingham University Hospitals NHS Trust representing the East Midlands Cancer Alliance) 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

Nottingham University Hospitals NHS Trust’s 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 East Midlands 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 Nottingham University Hospitals NHS Trust, such as in the following examples:

Investigating breaches

Nottingham University Hospitals NHS Trust 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

Nottingham University Hospitals NHS Trust 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 Nottingham University Hospitals NHS Trust 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.

Nottingham University Hospitals NHS Trust will use the data to both monitor and improve performance against the Cancer Waiting Time standards and to inform wider Cancer pathway improvements.

Nottingham University Hospitals NHS Trust’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. Nottingham University Hospitals NHS Trust 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) and any small numbers would be supressed.

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.

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 the lead organisation, Nottingham University Hospitals NHS Trust (which is the legal entity), will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the Nottingham University Hospitals Trust 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 Nottingham University Hospitals NHS Trust’s Senior Information Risk Officer (SIRO), and where there is a valid Data Sharing Agreement between Nottingham University Hospitals NHS Trust 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).

Nottingham University Hospitals NHS Trust users will access:

a) Aggregate reports (which may include unsuppressed small numbers, as outlined in section 5a – (Objective for Processing)

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 Nottingham University Hospitals NHS Trust 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 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 internal project management team and cancer leads from corresponding CCG’s in the format described in purpose 1 and purpose 2 of this agreement (see section 5a – Objective for Processing). The primary method for sharing outputs NHS mail to NHS mail.

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 Midlands and East. 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 Nottingham University Hospitals NHS Trust 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 wait time targets.

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 East Midlands Cancer Patients.

NHS Digital reminds all organisations party to this agreement of the need to comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data)

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 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.

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. This includes the new 28 day faster diagnosis standard being introduced as a standard from April 2020.

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 standards already in place for nine standards:-

• 2 week wait urgent GP referral – 93%

• 2 week wait breast symptomatic – 93%

• 31 day 1st treatment - 96%

• 31 day subsequent surgery – 94%

• 31 day subsequent drugs – 98%

• 31 day subsequent radiotherapy – 94%

• 62 day (GP) referral to 1st treatment – 85%

• 62 day (screening ) referral to 1st treatment – 90%

• 62 day upgrade to 1st treatment – locally agreed standard

In addition this access and use of data will be key in delivering the new 28 day faster diagnosis standard being introduced from 2020

2) Benefits type: Improvements beyond constitutional standards (e.g. 2 week wait and 62 day targets).

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 Cancer Taskforce recommendation set out a number of ambitions to be met nationally and locally by 2020 including improving 1 year survival for Cancer to 75%, and improving the proportions of patients staged 1 or 2 to 62%. 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.

Cancer Alliances have previously had access to Cancer Waiting Times reports and pseudonymised data through the system on Open Exeter, under an agreement with NHS England. This has enabled analysis to inform service improvement both to achieve the national Cancer Waiting Times standards and also wider Cancer pathway improvement work, which will have contributed to oncoming improvements to Cancer survival, and patient experience.

Examples of specific work undertaken by East Midland Cancer Alliance previously include:-

· Analyse 62 day performance across the region by trusts/ CCG and tumour site to understand problem areas and help us achieve future targets.

· Analyse number 2 week wait referrals and 2 week wait performance across the region by trusts/ CCG and tumour site.

· Analyse 31 day performance across the region by trusts/ CCG and tumour site. Using number of 31 day patients as a proxy for diagnosis.

· Anonymised record level data would allow us to calculate mean wait times with 95% CI as well as other statistical tests.

· Perform detailed trend analysis and create statistical process control charts of each target. Using a before and after approach to look at the impact of Cancer Alliance funding on priority areas