Good TREs work
Humber, Coast And Vale Cancer Alliance projects
16 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
Cancer Alliance access to National Cancer Waiting Times Monitoring Data Set (NCWTMDS) from the Cancer Wait Times (CWT) System — DARS-NIC-204531-P5L8G
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
Purposes: No (Clinical Commissioning Group (CCG), Sub ICB Location, Network)
Sensitive: Non Sensitive, and Non-Sensitive, and Sensitive
When:DSA runs 2019-11-01 — 2020-10-31 2019.11 — 2024.09.
Access method: System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)
Data-controller type: NHS EAST RIDING OF YORKSHIRE CCG, NHS HUMBER AND NORTH YORKSHIRE ICB - 02Y
Sublicensing allowed: No
Datasets:
- National Cancer Waiting Times Monitoring DataSet (CWT)
- National Cancer Waiting Times Monitoring DataSet (NCWTMDS)
Objectives:
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 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.
Humber, Coast and Vale Cancer Alliance
NHS East Riding of Yorkshire Clinical Commissioning Group (the CA's Hosting organisation) will directly access the Cancer Waiting Times System on behalf of Humber, Coast and Vale Cancer Alliance across Humber, Coast and Vale. Humber, Coast and Vale Cancer Alliance is hosted by NHS East Riding of Yorkshire Clinical Commissioning Group a population of 1.4 million people.
NHS East Riding of Yorkshire Clinical Commissioning Group hosts Humber, Coast and Vale Cancer Alliance.
NHS East Riding of Yorkshire Clinical Commissioning Group works with health organisations across Humber, Coast and Vale including 3 acute providers, 6 clinical commissioning groups, no community providers and 6 hospices.
Acute Providers
Hull and East Yorkshire Hospitals NHS Trust (RWA)
Northern Lincolnshire and Goole Hospitals NHS Foundation Trust (RJL)
York Teaching Hospitals NHS Foundation Trust (RCB)
Clinical Commissioning Groups
NHS East Riding of Yorkshire Clinical Commissioning Group (02Y)
NHS Hull Clinical Commissioning Group (03F)
NHS North East Lincolnshire Clinical Commissioning Group (03H)
NHS North Lincolnshire Clinical Commissioning Group (03K)
NHS Scarborough & Ryedale Clinical Commissioning Group (03M)
NHS Vale of York Clinical Commissioning Group (03Q)
Hospices
Andy’s Children’s Hospice, Barton-upon-Humber
Dove House Hospice, Hull
Lindsey Lodge, Scunthorpe
Saint Catherine's Hospice, Scarborough
St Andrew's Hospice, Grimsby
St Leonards Hospice, York
Data access
The CWT system provides the lead organisations 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' CCG of responsibility. This Cancer Alliance is limited to Humber, Coast and Vale 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
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/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
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 CCG 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 CCG level. Lead organisations will access a summary of the totals for the Providers (Trust) and CCGs that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCGs they are aligned to). This analysis would then be shared with the providers and commissioners (Acute Providers, CCGs, Community Providers & Hospices) 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 (Acute Providers, CCGs, Community Providers & Hospices) responsible for direct patient care for that patient. This will be for local clinical audit purposes.
The two broad purposes for this would be;
1) To support local clinical 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.
While the Cancer Alliance works together to decide on areas of interest, the lead organisation decides, independently, how to support these decisions via the use of the CWT data.
Yielded Benefits:
The CA has used data available from NHS England's (NHSE) Statistical Work Areas; information received from Cancer Alliance Data, Evidence and Analysis Service (CADEAS) and other public websites such as Fingertips to create a variety of products such as: o Cancer Performance Dashboard o Diagnostics Waiting Times and Activity for Diagnostic Tests and Procedures Dashboard o 2 Week Wait Conversion Rates These products have been used to assist the Cancer Alliance to provide performance insights for all trusts and CCGs; analysis of individual trusts’ performance against each indicator down to the individual tumour or treatment type; performance management information to guide conversations with NHS England, CCGs, individual trusts and the CA’s Programme Executive Board; System Board; Systems Performance Assurance and Monitoring Group etc. In addition, these products and other analysis has been used to information: o Bids for Transformational funding: Cancer Champions Programme (CCP) was developed in North East Lincolnshire and is being rolled out to all areas within Humber Coast & Vale (HCV). The CCP is designed to inform local populations, so they can identify symptoms and when and how to access services. The aim is to achieve an 11% increase in individuals acting on symptoms. The programme focuses on 12 cancers and includes awareness and understanding of the 3 screening programmes. Training is delivered within traditionally hard to reach communities\local businesses, health organisations, local councils and voluntary groups. The target to achieve 400 cancer champions has been reached 4 months ahead of schedule due to the popularity of the courses. The aim is to reach 800 champions in high risk communities by March 2019. Diagnostics Work Programme – Decisions have/will be made about the future shape of diagnostics services (radiology, pathology, endoscopy) and action plans will be developed to deliver the necessary changes to enable delivery of the future model across HCV. This will include decisions about what equipment is required and where it should be placed for greatest impact and a strategy for diagnostics workforce development, recruitment and retention. We will also adopt standardise processes to remove unwarranted variation in practice and patient experience. All patients across HCV, both cancer and non-cancer, will benefit from an improved diagnostics services in terms of more timely diagnosis and access to treatment and reduced anxiety caused by waiting for a diagnosis. The ambition is for all diagnostic tests to be done and reported in accordance with national standards including CWT standards and pathway specific requirements. Outputs of the programme to date are a completed capacity and demand exercise across HCV which is informing priorities and development of the future model, on a strategic and collaborative basis. Work to commence delivery of digital pathology services and a networked approach to radiology reporting are also underway. o Bids for funding 62 Day Recovery Funding to improve the 62 day operation standard e.g. CA received £780k to provide additional services such as: Colorectal Straight to Test – Funding (£214k) to appoint CNS’s to triage referrals and send patient straight to test where appropriate. It is expected 500 patients will be seen between Nov 18 and Mar 19. Endoscopy activity - 17 weekend sessions to provide 400 additional colonoscopy procedures. 25 Follow Up clinics to progress patients requiring treatment. For a period of 3 months an additional 50 lists equating to 250 surveillance patients which would free up 10 FT slots per week internally; total of 120 FT slots - impact would be to reduce the endoscopy diagnostic part of the pathway by 4 days; Imaging and Reporting Capacity – Additional 24 MRI slots for 16 weeks (total of 384 slots). This additional MRI capacity would enable FT turnaround times within 2 weeks for all the Trust's cancer sites and would allow specific focus on prostate. Additional 300 CT Scans taken and reported across Humber Coast and Vale footprint o Inform various pathway workshops where the aim of the day was to: Understand and agree the “as is”; Capture what is already ongoing; Identify opportunities to share and collaborate; Identify additional actions/resources required and Agree future ways of working. o Ongoing access to CWT data is essential to support our understanding of patient volumes and achievement against the standards at a tumour site specific level so that we can plan and prioritise service development that will have the biggest impact.
Expected Benefits:
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
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.
Outputs:
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.
Processing:
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.
As East Riding of Yorkshire Clinical Commissioning Group is acting as the lead organisation in a Cancer Alliance their access is via the same route as other Cancer Alliances i.e via the Cancer Wait Times (CWT) System. The team doing this processing within the CCG is separate from the commissioning team and would not have access to data provide via the DSCRO route. Additionally any separate agreement that the CCG has to access CWT may include other processors and purposes.
Only the lead organisation, NHS East Riding of Yorkshire Clinical Commissioning Group will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS East Riding of Yorkshire Clinical Commissioning Group server. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs; the Humber, Coast and Vale cancer Alliance Core team.
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 organisation's 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).
NHS East Riding of Yorkshire 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 NHS East Riding of Yorkshire Clinical Commissioning Group 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 in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is via NHS email.
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.
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.
For clarity, any access by Telstra, Telecity and Calderdale and Huddersfield NHS Foundation Trust and to 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.
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.