Royal Marsden Partners access to National Cancer Waiting Times Monitoring Data Set (NCWTMDS) from the Cancer Wait Times (CWT) System.

This agreement is for the North West and South West London Cancer Alliance to access Cancer Waiting Times data. The purpose in which the data requested under this agreement is derived from the direction determined by senior members within the Cancer Alliance, led by the Managing Director. However, the Cancer Alliance is not a legal entity - its staff (and those accessing the Cancer Waiting Times data) are substantively employed by The Royal Marsden NHS Foundation Trust. The Royal Marsden NHS Foundation 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 - The Royal Marsden NHS Foundation Trust.

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 Taskforces 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 Integrated Care Board (ICB) Improvement and Assessment Framework (IAF), including, importantly, in the 62 day wait from referral to first treatment standard.

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.

Cancer alliances are also created to drive improvement in cancer outcomes. Align with the improvement trajectory set for cancer survival (also part of ICB IAF), cancer alliances are set to deliver the Faster Diagnostic Standards (FDS) from April 2021 (delayed from April 2020). FDS is part of CWT dataset, referring to the duration between urgent GP referral to patients being told whether they have a cancer diagnosis or not.

The National Cancer Programme has confirmed that FDS, along with 62-day wait, will be key metrics within the 10 year NHS Plan that Cancer Alliances will be held accountable to. Thus without access to the data as outlined in this request, the Cancer Alliance will not be able to deliver work programme as outlined by the National Cancer Programme. The Cancer Alliance will directly access the Cancer Waiting Times System on behalf of alliance member trusts and ICBs

RM Partners Cancer Alliance

The Royal Marsden NHS Foundation Trust will directly access the Cancer Waiting Times System on behalf of Royal Marsden Partners, the Cancer Alliance works with health organisations across North West and South West London:

Acute Providers

• Chelsea and Westminster Hospital NHS Foundation Trust

• Croydon Health Services NHS Trust

• Epsom and St Helier University Hospitals NHS Trust

• Imperial College Healthcare NHS Trust

• Kingston Hospital NHS Foundation Trust

• London North West University Healthcare NHS Trust

• Royal Brompton & Harefield NHS Foundation Trust

• St George’s University Hospitals NHS Foundation Trust

• The Hillingdon Hospitals NHS Foundation Trust

• The Royal Marsden NHS Foundation Trust

ICBs

NHS North West London Integrated Care Board

NHS South West Region London Integrated Care Board

Community Providers

• Central London Community Healthcare

• Central North West London Community Trust

• Hounslow and Richmond Community Healthcare NHS Trust

• Your Healthcare CIC – Kingston and Richmond.

Hospices

• Meadow House Hospice

• Michael Sobell Hospice

• Pembridge Palliative Care Centre

• Princess Alice Hospice

• Royal Trinity Hospice

• St Christopher’s Hospice

• St John’s Hospice

• St Luke’s Hospice

• St Raphael’s Hospice

Data access

The CWT system provides the Data Controller / Processor 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

The organisation will only access patient records which fall within the Cancer Alliances' footprint of responsibility based on the patients' ICB of responsibility.

A) Aggregate reports including small numbers

Aggregate data is available in the form of reports at Provider (Trust) and ICB level. Small numbers may be included in the aggregate data reports and are essential for analyses carried out by lead organisations.

Investigating breaches

The Data Controller routinely monitors 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

Approved users 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.

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

The Cancer Alliance'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 ICB level. Lead organisations will access a summary of the totals for the Providers (Trust) and ICB's 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 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 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. 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

c. 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.

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.

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 Royal Marsden NHS Foundation Trust previously include:-

• Tumour specific Cancer waiting times comparisons across London and Greater Manchester, which has been used to benchmark providers and CCGs, influenced investment through the cancer transformation fund and aided discussions with providers and CCGs to improve performance against the national standards.

• Another key measure has been to review usage of the 2 week wait referral route locally, reviewing the proportion of referrals which result in a diagnosis of Cancer. This has influenced discussions particularly in the context of increasing referral rates locally.

• Analysis of 62 day performance where patients have started as a referral for one type of suspected Cancer and are then diagnosed with a different Cancer. Performance for this cohort of patients can be significantly worse than those referred for the same Cancer type for example, Sarcoma Cancers starting under different 2 week wait referrals, and lymphomas starting as Head and Neck 2 week wait referrals. This has been of particular use previously to justify pilots of new models of diagnostics including one stop clinics and multi-diagnostic hubs.

• Another suite of analysis undertaken by Royal Marsden NHS Foundation Trust has been to look at the time to 1st appointment, in particular comparing trusts at tumour level, and if patients are 1st seen in < 7 days, 7-10days, 11-14 days or 14 days+. This was used in conjunction with the 62 day performance by 1st seen day and analysis showed that in London and Greater Manchester, the 85% standard is exceeded for patients seen in less than 7 days and drops for each of the above groupings. Such analysis has added significant weight to discussions with providers to reduce 1st appointment waits.

• Use of the system helped Royal Marsden NHS Foundation Trust, particularly with a focus on London, to perform analysis on ‘long waiter’ patients on the 62 day pathway. Analysis performed included a review of the times between pathway steps, the breach reason, the type of Cancer, and the 1st treatment type. It was also utilised for overarching distribution analysis to demonstrate the change of pace of patients being treated as soon as they pass day 62 (i.e. the distribution gradient decreases significantly for most tumour types at day 62) This information was used to facilitate discussions with individual providers to improve the pathways for future patients.

• Data has been used to provide assurance across the system in respect of data quality e.g. active monitoring usage, and reviewing orphan records where 2 week wait referrals aren’t linked to 1st treatment records. In this scenario this resulted at least one trust amending its reporting to be in line with national guidance.

• Having the full Cancer waits dataset with the Pathway Patient Identifier allows Cancer Alliances to see all treatments being recorded in the dataset. For example, time from surgery to radiotherapy where the clinical recommendation is this should be less than 6 weeks. At the time geographical clinicians felt this was achieved for most patients however analysis of the data showed that less than 40% of patients actually received radiotherapy within this time. This resulted in significant work to improve this pathway particularly where patients has surgery at one provider and radiotherapy at another.

- Within 2019/20 this provided a number of benefits which will have directly improved patients care. This includes using this data to produce detailed analysis on pathways which has enabled the Alliance to implement improvements to cancer pathways. In addition the dataset has allowed the Alliance to have effective discussions with providers on individual cases where waits are exceptionally long and could have impacted survival, in order to reduce the risk of similar delays in the future and ultimately improve the outcomes for cancer patients. More recently the data has allowed the Alliance to effectively plan its response and recovery to COVID-19 including providing the necessary data to model the expected additional demand for treatments and diagnostics. It has also allowed the Alliance to gain a vast insight into where diagnoses and treatments have dropped in cancer patients, allowing the Alliance to more rapidly react to such trends, and ultimately mitigate the impacts sooner and reduce the number of patients dying from their cancer.

RMP Alliance are dependant on access to this data. Over the past year the cancer alliance has used the data to assist in furthering the benefits outline within the June 2020 update. Use of the CWT System data has enabled RMP Alliance in making informed decisions in improving services where waiting times are of a concern and enables RMP Alliance to work closely with West London trusts and primary care partners. Where data has been used in forward planning, to understand the variations in cancer services within the cancer alliance area, highlighting any areas of concern. The data has also been used to measure the effectiveness of cancer alliance innovation projects and early intervention programmes for cancer pathways.

This agreement is for the North West and South West London 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 The Royal Marsden NHS Foundation Trust. The Royal Marsden NHS Foundation 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 - The Royal Marsden NHS Foundation Trust. The data will be processed under GDPR Article 6 (1) (e) and GDPR Article 9 (2) (j).

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, 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.

Cancer Alliances previously accessed the former CWT system via Open Exeter. From 1st April 2018, a new and improved CWT system was implemented which hosts the dataset, which also incorporates the iView Plus tool.

RM Partners Cancer Alliance

The Royal Marsden NHS Foundation Trust will directly access the Cancer Waiting Times System on behalf of Royal Marsden Partners, the Cancer Alliance across North West and South West London. RM Partners Cancer Alliance is hosted by The Royal Marsden NHS Foundation Trust and covers a population of 3.9 million people.

RM Partners works with health organisations across north west and south west London, including 10 acute providers, 14 clinical commissioning groups, 4 community providers and 9 hospices.

Acute Providers

• Chelsea and Westminster Hospital NHS Foundation Trust

• Croydon Health Services NHS Trust

• Epsom and St Helier University Hospitals NHS Trust

• Imperial College Healthcare NHS Trust

• Kingston Hospital NHS Foundation Trust

• London North West University Healthcare NHS Trust

• Royal Brompton & Harefield NHS Foundation Trust

• St George’s University Hospitals NHS Foundation Trust

• The Hillingdon Hospitals NHS Foundation Trust

• The Royal Marsden NHS Foundation Trust

CCGs

• Brent CCG

• Central London CCG

• Ealing CCG

• Hammersmith & Fulham CCG

• Harrow CCG

• Hillingdon CCG

• Hounslow CCG

• West London CCG

• South West London CCG

For information, NHS Croydon CCG, NHS Kingston CCG, NHS Merton CCG, NHS Richmond CCG, NHS Sutton CCG and NHS Wandsworth CCG transferred to the new CCG, NHS South West London CCG on 1st April 2020 as part of a merger and therefore are no longer listed separately.

Community Providers

• Central London Community Healthcare

• Central North West London Community Trust

• Hounslow and Richmond Community Healthcare NHS Trust

• Your Healthcare CIC – Kingston and Richmond.

Hospices

• Meadow House Hospice

• Michael Sobell Hospice

• Pembridge Palliative Care Centre

• Princess Alice Hospice

• Royal Trinity Hospice

• St Christopher’s Hospice

• St John’s Hospice

• St Luke’s Hospice

• St Raphael’s Hospice

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' CCG of responsibility. This Cancer Alliance is limited to North-West and South-West London 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/Identifiable 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 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 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 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. 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.

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 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.

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 Royal Marsden NHS Foundation Trust previously include:-

• Tumour specific Cancer waiting times comparisons across London and Greater Manchester, which has been used to benchmark providers and CCGs, influenced investment through the cancer transformation fund and aided discussions with providers and CCGs to improve performance against the national standards.

• Another key measure has been to review usage of the 2 week wait referral route locally, reviewing the proportion of referrals which result in a diagnosis of Cancer. This has influenced discussions particularly in the context of increasing referral rates locally.

• Analysis of 62 day performance where patients have started as a referral for one type of suspected Cancer and are then diagnosed with a different Cancer. Performance for this cohort of patients can be significantly worse than those referred for the same Cancer type for example, Sarcoma Cancers starting under different 2 week wait referrals, and lymphomas starting as Head and Neck 2 week wait referrals. This has been of particular use previously to justify pilots of new models of diagnostics including one stop clinics and multi-diagnostic hubs.

• Another suite of analysis undertaken by Royal Marsden NHS Foundation Trust has been to look at the time to 1st appointment, in particular comparing trusts at tumour level, and if patients are 1st seen in < 7 days, 7-10days, 11-14 days or 14 days+. This was used in conjunction with the 62 day performance by 1st seen day and analysis showed that in London and Greater Manchester, the 85% standard is exceeded for patients seen in less than 7 days and drops for each of the above groupings. Such analysis has added significant weight to discussions with providers to reduce 1st appointment waits.

• Use of the system helped Royal Marsden NHS Foundation Trust, particularly with a focus on London, to perform analysis on ‘long waiter’ patients on the 62 day pathway. Analysis performed included a review of the times between pathway steps, the breach reason, the type of Cancer, and the 1st treatment type. It was also utilised for overarching distribution analysis to demonstrate the change of pace of patients being treated as soon as they pass day 62 (i.e. the distribution gradient decreases significantly for most tumour types at day 62) This information was used to facilitate discussions with individual providers to improve the pathways for future patients.

• Data has been used to provide assurance across the system in respect of data quality e.g. active monitoring usage, and reviewing orphan records where 2 week wait referrals aren’t linked to 1st treatment records. In this scenario this resulted at least one trust amending its reporting to be in line with national guidance.

• Having the full Cancer waits dataset with the Pathway Patient Identifier allows Cancer Alliances to see all treatments being recorded in the dataset. For example, time from surgery to radiotherapy where the clinical recommendation is this should be less than 6 weeks. At the time geographical clinicians felt this was achieved for most patients however analysis of the data showed that less than 40% of patients actually received radiotherapy within this time. This resulted in significant work to improve this pathway particularly where patients has surgery at one provider and radiotherapy at another.

June 2020 update:

- Within 2019/20 this provided a number of benefits which will have directly improved patients care. This includes using this data to produce detailed analysis on pathways which has enabled the Alliance to implement improvements to cancer pathways. In addition the dataset has allowed the Alliance to have effective discussions with providers on individual cases where waits are exceptionally long and could have impacted survival, in order to reduce the risk of similar delays in the future and ultimately improve the outcomes for cancer patients. More recently the data has allowed the Alliance to effectively plan its response and recovery to COVID-19 including providing the necessary data to model the expected additional demand for treatments and diagnostics. It has also allowed the Alliance to gain a vast insight into where diagnoses and treatments have dropped in cancer patients, allowing the Alliance to more rapidly react to such trends, and ultimately mitigate the impacts sooner and reduce the number of patients dying from their cancer.

June 2021 update:

RMP Alliance are dependant on access to this data. Over the past year the cancer alliance has used the data to assist in furthering the benefits outline within the June 2020 update. Use of the CWT System data has enabled RMP Alliance in making informed decisions in improving services where waiting times are of a concern and enables RMP Alliance to work closely with West London trusts and primary care partners. Where data has been used in forward planning, to understand the variations in cancer services within the cancer alliance area, highlighting any areas of concern. The data has also been used to measure the effectiveness of cancer alliance innovation projects and early intervention programmes for cancer pathways.

This agreement is for the North West and South West London 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 The Royal Marsden NHS Foundation Trust. The Royal Marsden NHS Foundation 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 - The Royal Marsden NHS Foundation Trust. The data will be processed under GDPR Article 6 (1) (e) and GDPR Article 9 (2) (j).

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, 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.

Cancer Alliances previously accessed the former CWT system via Open Exeter. From 1st April 2018, a new and improved CWT system was implemented which hosts the dataset, which also incorporates the iView Plus tool.

RM Partners Cancer Alliance

The Royal Marsden NHS Foundation Trust will directly access the Cancer Waiting Times System on behalf of Royal Marsden Partners, the Cancer Alliance across North West and South West London. RM Partners Cancer Alliance is hosted by The Royal Marsden NHS Foundation Trust and covers a population of 3.9 million people.

RM Partners works with health organisations across north west and south west London, including 10 acute providers, 14 clinical commissioning groups, 4 community providers and 9 hospices.

Acute Providers

• Chelsea and Westminster Hospital NHS Foundation Trust

• Croydon Health Services NHS Trust

• Epsom and St Helier University Hospitals NHS Trust

• Imperial College Healthcare NHS Trust

• Kingston Hospital NHS Foundation Trust

• London North West University Healthcare NHS Trust

• Royal Brompton & Harefield NHS Foundation Trust

• St George’s University Hospitals NHS Foundation Trust

• The Hillingdon Hospitals NHS Foundation Trust

• The Royal Marsden NHS Foundation Trust

CCGs

• Brent CCG

• Central London CCG

• Ealing CCG

• Hammersmith & Fulham CCG

• Harrow CCG

• Hillingdon CCG

• Hounslow CCG

• West London CCG

• South West London CCG

For information, NHS Croydon CCG, NHS Kingston CCG, NHS Merton CCG, NHS Richmond CCG, NHS Sutton CCG and NHS Wandsworth CCG transferred to the new CCG, NHS South West London CCG on 1st April 2020 as part of a merger and therefore are no longer listed separately.

Community Providers

• Central London Community Healthcare

• Central North West London Community Trust

• Hounslow and Richmond Community Healthcare NHS Trust

• Your Healthcare CIC – Kingston and Richmond.

Hospices

• Meadow House Hospice

• Michael Sobell Hospice

• Pembridge Palliative Care Centre

• Princess Alice Hospice

• Royal Trinity Hospice

• St Christopher’s Hospice

• St John’s Hospice

• St Luke’s Hospice

• St Raphael’s Hospice

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' CCG of responsibility. This Cancer Alliance is limited to North-West and South-West London 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/Identifiable 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 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.

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.

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 Royal Marsden NHS Foundation Trust previously include:-

• Tumour specific Cancer waiting times comparisons across London and Greater Manchester, which has been used to benchmark providers and CCGs, influenced investment through the cancer transformation fund and aided discussions with providers and CCGs to improve performance against the national standards.

• Another key measure has been to review usage of the 2 week wait referral route locally, reviewing the proportion of referrals which result in a diagnosis of Cancer. This has influenced discussions particularly in the context of increasing referral rates locally.

• Analysis of 62 day performance where patients have started as a referral for one type of suspected Cancer and are then diagnosed with a different Cancer. Performance for this cohort of patients can be significantly worse than those referred for the same Cancer type for example, Sarcoma Cancers starting under different 2 week wait referrals, and lymphomas starting as Head and Neck 2 week wait referrals. This has been of particular use previously to justify pilots of new models of diagnostics including one stop clinics and multi-diagnostic hubs.

• Another suite of analysis undertaken by Royal Marsden NHS Foundation Trust has been to look at the time to 1st appointment, in particular comparing trusts at tumour level, and if patients are 1st seen in < 7 days, 7-10days, 11-14 days or 14 days+. This was used in conjunction with the 62 day performance by 1st seen day and analysis showed that in London and Greater Manchester, the 85% standard is exceeded for patients seen in less than 7 days and drops for each of the above groupings. Such analysis has added significant weight to discussions with providers to reduce 1st appointment waits.

• Use of the system helped Royal Marsden NHS Foundation Trust, particularly with a focus on London, to perform analysis on ‘long waiter’ patients on the 62 day pathway. Analysis performed included a review of the times between pathway steps, the free text breach reason, the type of Cancer, and the 1st treatment type. It was also utilised for overarching distribution analysis to demonstrate the change of pace of patients being treated as soon as they pass day 62 (i.e. the distribution gradient decreases significantly for most tumour types at day 62) This information was used to facilitate discussions with individual providers to improve the pathways for future patients.

• Data has been used to provide assurance across the system in respect of data quality e.g. active monitoring usage, and reviewing orphan records where 2 week wait referrals aren’t linked to 1st treatment records. In this scenario this resulted at least one trust amending its reporting to be in line with national guidance.

• Having the full Cancer waits dataset with the Pathway Patient Identifier allows Cancer Alliances to see all treatments being recorded in the dataset. For example, time from surgery to radiotherapy where the clinical recommendation is this should be less than 6 weeks. At the time geographical clinicians felt this was achieved for most patients however analysis of the data showed that less than 40% of patients actually received radiotherapy within this time. This resulted in significant work to improve this pathway particularly where patients has surgery at one provider and radiotherapy at another.

June 2020 update:

- Within 2019/20 this provided a number of benefits which will have directly improved patients care. This includes using this data to produce detailed analysis on pathways which has enabled the Alliance to implement improvements to cancer pathways. In addition the dataset has allowed the Alliance to have effective discussions with providers on individual cases where waits are exceptionally long and could have impacted survival, in order to reduce the risk of similar delays in the future and ultimately improve the outcomes for cancer patients. More recently the data has allowed the Alliance to effectively plan its response and recovery to COVID-19 including providing the necessary data to model the expected additional demand for treatments and diagnostics. It has also allowed the Alliance to gain a vast insight into where diagnoses and treatments have dropped in cancer patients, allowing the Alliance to more rapidly react to such trends, and ultimately mitigate the impacts sooner and reduce the number of patients dying from their cancer.

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, 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.

Cancer Alliances previously accessed the former CWT system via Open Exeter. From 1st April 2018, a new and improved CWT system was implemented which hosts the dataset, which also incorporates the iView Plus tool.

RM Partners Cancer Alliance

The Royal Marsden NHS Foundation Trust will directly access the Cancer Waiting Times System on behalf of Royal Marsden Partners, the Cancer Alliance across North West and South West London. RM Partners Cancer Alliance is hosted by The Royal Marsden NHS Foundation Trust and covers a population of 3.9 million people.

RM Partners works with health organisations across north west and south west London, including 10 acute providers, 14 clinical commissioning groups, 4 community providers and 9 hospices.

Acute Providers

• Chelsea and Westminster Hospital NHS Foundation Trust

• Croydon Health Services NHS Trust

• Epsom and St Helier University Hospitals NHS Trust

• Imperial College Healthcare NHS Trust

• Kingston Hospital NHS Foundation Trust

• London North West University Healthcare NHS Trust

• Royal Brompton & Harefield NHS Foundation Trust

• St George’s University Hospitals NHS Foundation Trust

• The Hillingdon Hospitals NHS Foundation Trust

• The Royal Marsden NHS Foundation Trust

CCGs

• Brent CCG

• Central London CCG

• Croydon CCG

• Ealing CCG

• Hammersmith CCG

• Harrow CCG

• Hillingdon CCG

• Hounslow CCG

• Kingston CCG

• Merton CCG

• Richmond CCG

• Sutton CCG

• Wandsworth CCG

• West London CCG

Community Providers

• Central London Community Healthcare

• Central North West London Community Trust

• Hounslow and Richmond Community Healthcare NHS Trust

• Your Healthcare CIC – Kingston and Richmond.

Hospices

• Meadow House Hospice

• Michael Sobell Hospice

• Pembridge Palliative Care Centre

• Princess Alice Hospice

• Royal Trinity Hospice

• St Christopher’s Hospice

• St John’s Hospice

• St Luke’s Hospice

• St Raphael’s Hospice

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' CCG of responsibility. This Cancer Alliance is limited to North-West and South-West London 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/Identifiable 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 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.

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.

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 Royal Marsden NHS Foundation Trust previously include:-

• Tumour specific Cancer waiting times comparisons across London and Greater Manchester, which has been used to benchmark providers and CCGs, influenced investment through the cancer transformation fund and aided discussions with providers and CCGs to improve performance against the national standards.

• Another key measure has been to review usage of the 2 week wait referral route locally, reviewing the proportion of referrals which result in a diagnosis of Cancer. This has influenced discussions particularly in the context of increasing referral rates locally.

• Analysis of 62 day performance where patients have started as a referral for one type of suspected Cancer and are then diagnosed with a different Cancer. Performance for this cohort of patients can be significantly worse than those referred for the same Cancer type for example, Sarcoma Cancers starting under different 2 week wait referrals, and lymphomas starting as Head and Neck 2 week wait referrals. This has been of particular use previously to justify pilots of new models of diagnostics including one stop clinics and multi-diagnostic hubs.

• Another suite of analysis undertaken by Royal Marsden NHS Foundation Trust has been to look at the time to 1st appointment, in particular comparing trusts at tumour level, and if patients are 1st seen in < 7 days, 7-10days, 11-14 days or 14 days+. This was used in conjunction with the 62 day performance by 1st seen day and analysis showed that in London and Greater Manchester, the 85% standard is exceeded for patients seen in less than 7 days and drops for each of the above groupings. Such analysis has added significant weight to discussions with providers to reduce 1st appointment waits.

• Use of the system helped Royal Marsden NHS Foundation Trust, particularly with a focus on London, to perform analysis on ‘long waiter’ patients on the 62 day pathway. Analysis performed included a review of the times between pathway steps, the free text breach reason, the type of Cancer, and the 1st treatment type. It was also utilised for overarching distribution analysis to demonstrate the change of pace of patients being treated as soon as they pass day 62 (i.e. the distribution gradient decreases significantly for most tumour types at day 62) This information was used to facilitate discussions with individual providers to improve the pathways for future patients.

• Data has been used to provide assurance across the system in respect of data quality e.g. active monitoring usage, and reviewing orphan records where 2 week wait referrals aren’t linked to 1st treatment records. In this scenario this resulted at least one trust amending its reporting to be in line with national guidance.

• Having the full Cancer waits dataset with the Pathway Patient Identifier allows Cancer Alliances to see all treatments being recorded in the dataset. For example, time from surgery to radiotherapy where the clinical recommendation is this should be less than 6 weeks. At the time geographical clinicians felt this was achieved for most patients however analysis of the data showed that less than 40% of patients actually received radiotherapy within this time. This resulted in significant work to improve this pathway particularly where patients has surgery at one provider and radiotherapy at another.