Good TREs work
Somerset, Wiltshire, Avon And Gloucestershire Cancer Alliance projects
- DSA with NHS Digital to enable the Cancer Alliance to access the CWT system (partially via "system access")
4 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
DSA with NHS Digital to enable the Cancer Alliance to access the CWT system — DARS-NIC-415025-V8S5S
Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
Purposes: No (Network)
When:DSA runs 2020-11-30 — 2023-11-29
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 ENGLAND (QUARRY HOUSE)
Sublicensing allowed: No
- National Cancer Waiting Times Monitoring DataSet (NCWTMDS)
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 2021.
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 April 2021 (delayed from April 2020). Trusts are asked to ensure high level of data completeness for this item in 2019/20.
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 pathway and resulting improvements.
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 NHS England will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the NHS England 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).
SWAG 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 UCLH 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.net email accounts.
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 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. As well as the percentage of 62 Day performance, we will also need to look at number of activities, total numbers of patients treated, number of patients treated before and after Day 62
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, by tumour site (e.g. median pathway durations, and the ability to track changes over time with "run charts" as per NHS Improvement requirements)
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.