NHS Digital Data Release Register - reformatted

The Royal Marsden NHS Foundation Trust projects

88 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

A National Study Of Breast Cancer And A Range Of Late Effects Of Hodgkin Lymphoma Treatments In Women (ODR1516_470) — DARS-NIC-659282-H1F7C

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Research, NHS Trust)

Sensitive: Sensitive

When:DSA runs 2022-11-17 — 2023-11-16

Access method: One-Off

Data-controller type: THE ROYAL MARSDEN NHS FOUNDATION TRUST, THE INSTITUTE OF CANCER RESEARCH, THE ROYAL MARSDEN NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. NDRS Cancer Registry
  2. NDRS Linked HES A&E
  3. NDRS Linked HES APC
  4. NDRS Linked HES Outpatient
  5. NDRS Cancer Registrations
  6. NDRS Linked HES AE

Objectives:

This study has historically been managed by the Institute of Cancer Research (ICR), however following the retirement of the study’s Principal Investigator (PI) a new PI was selected from the Royal Marsden NHS Foundation Trust (RMNFT). This request is to add the RMNFT as a Data Controller and Data Processor to reflect that the purposes and means of processing will now be determined by, and processed by, individuals substantively employed by the RMNFT.

The ICR will remain as a controller and processor, as it is they who will be responsible for deciding how the data currently held at the ICR will be securely transferred to the RMNFT. Once all data held at the ICR has been transferred to the RMNFT, the ICR should no longer be considered a data controller or processor and will provide NHS Digital with evidence of data destruction. The RMNFT should take the appropriate steps to amend this Agreement to remove the ICR from this Agreement.

The principal aim of this study is to improve understanding of the risks of the wide range of long-term fatal and non-fatal morbidities in women treated for Hodgkin Lymphoma (HL) at young ages, and to create a unique risk profile of incidence and severity of multiple long-term comorbidities, in order to enable clinicians and patients to understand patients’ personalised risk profile when deciding on and consenting for treatment, and when managing follow-up and screening for late-effects.

Secondary aims are:
1. To determine the risks of developing second cancers, other morbidity, and cause-specific mortality in relation to newer HL treatment modalities, e.g. Doxorubicin (Adriamycin), Bleomycin, Vinblastine and Dacarbazine (ABVD) chemotherapy, which have been developed over the last 15-20 years with the aim of reducing the risk of long term toxicity, and compare these with older regimens such as Mechlorethamine, Vincristine (Oncovin), Procarbazine and Prednisone (MOPP) to clarify the extent to which late effects are attenuated by the more modern treatments.
2. To extend the range of morbidities for which data are available on adverse treatment effects from older HL treatments. Although there is considerable information on the effects on cancer and cardiovascular disease in the first 25 years after treatment, there is little for many other effects and for longer periods. This is important since a wide range of body systems are damaged by HL treatment, and since HL patients are largely treated as children or young adults, effects 40 and 50 years later are still of great importance – for instance, does breast cancer risk in these women remain raised, and therefore should intensive breast screening continue, or cease, at older ages?

To support these aims the study team request permission to retain the following datasets that were previously disseminated by the Public Health England (PHE) National Cancer Registration and Analysis Service (NCRAS):
• Identifiable National Disease Registry Service (NDRS) Cancer Registration Data
• Identifiable NDRS Linked Hospital Episode Statistics (HES)- inclusive of the Outpatient, Admitted Patient Care and Accident & Emergency subsets.

The ICR is permitted to retain this data until all the data has been successfully transferred to RMNFT, after which the ICR must destroy all data relating to this Agreement. RMNFT are permitted to retain and process data until the end date of this Agreement.

To address the UK GDPR principle of minimisation the data disseminated has been minimised to a cohort of ~10,000 women who were treated for HL at ages <35 years during 1956-2010. Further to this, prior to dissemination, the study team had extensive conversations with the NCRAS analysts who were able to assist the study team in ensuring that the request is limited to the minimum amount of data necessary for achieving the purposes outlined within this DSA.

The lawful basis for this processing falls under the UK General Data Protection Regulation (GDPR) Article 6(1)(e), the processing is necessary for the performance of a task in the public interest. The study processes sensitive health information for the purposes of scientific research with appropriate safeguards in place to protect personal information. The processing of special category data falls under UK GDPR Article 9(2)(j), the processing is necessary for scientific research, in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject). The data are required for research purposes in the public interest - meeting the conditions in the DPA 2018 Schedule 1 Part 1 (4) - which GDPR Recital 52(2) determines is an appropriate derogation from the prohibition on processing special categories of personal data.

This project has received funding from the National Institute of Health Research (NIHR), beyond providing funds for the study the NIHR does not play a role in determining the purpose and means of processing and does not process data disseminated under this Agreement.

Yielded Benefits:

The aim of this study is to enable patients and clinicians to undertake more-informed discussion and decision-making about the patient’s risk of long-term effects of a range of cancer treatments and therefore understand risks better, achieve greater informed consent at the point of cancer treatment, and embark on a more personalised care pathway. Such information would form a vital component of patients’ long-term “survivorship plans”, which are integrated into the NHS as a key part of patient care. Specific benefits that have arisen since this support has been in place: 1. The setup of this study and initial results enabled the publication of detailed risk profiles of these women’s much higher long-term risk of developing breast cancer following their Lymphoma treatment. In large part as a result of the information provided from this study, a national high-risk breast cancer screening programme (in partnership with PHE - now NHS Digital - and the Christie) has been established – BARD – breast screening after radiotherapy dataset. This is facilitating the systematic invitation of women to have breast cancer screening identified as being at high risk of developing breast cancer from the cancer treatments they received, as a direct consequence of the results of this study. It is hoped that this screening will significantly mitigate the risk of breast cancer in these women and enable earlier diagnosis and treatment to improve their long-term survival.

Expected Benefits:

This study aims to better understand the health impacts of HL treatment in women who were treated for HL <35 years, with a focus on whether certain HL treatments are associated with a greater incidence of second cancers and whether certain HL treatments are linked with negative future health outcomes. Carrying out this research may develop a greater understanding of the risks and benefits associated with HL treatments.

If the study findings are incorporated into clinical guidelines, the study may contribute to improved health outcomes for individuals that receive treatment for HL.

Outputs:

It is anticipated that the study findings will be published in peer-reviewed journals and will also be presented at relevant conferences.

Should the opportunity arise, the study may publish findings on the Trusts webpages, hold open lectures or engage with the press, this will aid the dissemination of the findings and will reach interested groups in civil society.

The study team are also required to provide NIHR, the study funder, with a final report that outlines the study's findings.

Cancer Alliance access to National Cancer Waiting Times Monitoring Data Set (NCWTMDS) from the Cancer Wait Times (CWT) System — DARS-NIC-190996-C4P8G

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 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(2)(b)(ii)

Purposes: No (NHS Trust, Independent Sector Healthcare Provider)

Sensitive: Non Sensitive, and Non-Sensitive

When:DSA runs 2019-06-14 — 2020-06-13 2019.09 — 2024.11.

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: THE ROYAL MARSDEN NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. National Cancer Waiting Times Monitoring DataSet (CWT)
  2. 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, 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.


Yielded Benefits:

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.

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.

Only the lead organisation (Royal Marsden NHS Foundation Trust) will directly access the Cancer Waiting Times system. Extracts can be downloaded and will be stored on the Royal Marsden NHS Foundation Trust servers. Role Based Access Control prevents access to data downloads to employees outside of the analytical team responsible for producing outputs; the Cancer Alliance informatics 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 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).

Royal Marsden NHS Foundation Trust 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 Royal Marsden NHS Foundation Trust unless otherwise specified in this agreement. Following completion of the analysis the record level data will be securely destroyed.

Users are not permitted to upload data into the system.

Data will only be available for the Providers (Trust) and CCG's that are treating cancer patients where they have a commissioning responsibility for that patient (based on the CCG that this Cancer Alliance is aligned to).

The data will only be shared with other members of the Cancer Alliance in the format described in purpose 1 and purpose 2 of this agreement. The primary method for sharing outputs is the cloud (see data processors, section 1c) .
Aggregate data/ graphical outputs may be shared via e-mail; for example as part of Alliance meeting papers.

Where record level data is shared with individual trusts these are shared only with trust(s) who were involved in the direct care of the patient, only via NHS.net email accounts.

As part of partnership working to improve Cancer Waiting Times performance, outputs may be shared with national/ regional bodies including NHS England; NHS Improvement and Transforming Services Team for London. Data will only be shared as described in purpose one and purpose two of this agreement and where recipient organisations hold a valid Data Sharing Agreement with NHS Digital to access Cancer Waiting Times data.

Training on the CWT system is not required as it is a data delivery system and it does not provide functionality to conduct bespoke detailed analysis. User guides are available for further assistance.

Access to the CWT system data is restricted to Cancer Alliance employees who are substantively employed by the Data Controller in fulfilment of their public health function.

The Cancer Alliances will use the data to produce a range of quantitative measures (counts, crude and standardised rates and
ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data.
Typical uses will include:
1) Analysis to support delivery of Cancer Waiting Times standard and identify variation, including clinical discussions to improve patient pathways
a. Comparative Cancer Waiting Times performance at tumour group and individual tumour site (i.e. ICD10 code) level for Trusts and CCGs.
b. Analysis of Cancer Waiting Times performance by treatment modality to inform discussions
c. Grouping length of waits for standards to inform discussions on going beyond constitutional standards
d. Analysis of free text and derived breach reason fields to identify trends in reasons for delays.
e. To provide assurance through comparative analysis (e.g. orphan record identification, active monitoring proportions and validation of waiting list adjustments entered)
f. Analysis of flows of patients including analysis by provider trust site
g. Outlier identification including exceptionally long waits to inform individual queries to providers

2) Cancer Waits analysis (not directly linked to constitutional standards) for the aim of identifying variation which may impact Cancer patient’s outcomes or patient experience. Examples for use of the data may include reviewing waits between surgery and radiotherapy for Head and Neck cancer patients with a maximum recommended wait of 6 weeks and using the data source to validate surgical numbers by provider trust.

The Royal Marsden NHS Foundation Trust will be the Information Asset Owner for the CWT system on behalf of the Cancer Alliance and be responsible to NHS Digital for ensuring that the data is only used in fulfilment of the approved public health purposes as set out in this agreement.

RM Partners Cancer Alliance HDIS access to baseline cancer services (Amendment to extend agreement, to remove The Christie NHS FT & KPMG and HES/SUS PbR extract previously acquired). Additionally one additional HDIS user added to agreement — DARS-NIC-69707-G0Q7Z

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, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii)

Purposes: No (NHS Trust, Independent Sector Healthcare Provider)

Sensitive: Non Sensitive, and Non-Sensitive

When:DSA runs 2019-02-01 — 2020-03-31 2017.09 — 2024.11.

Access method: Ongoing, One-Off, System access, System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)

Data-controller type: THE ROYAL MARSDEN NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. Hospital Episode Statistics Admitted Patient Care
  2. Hospital Episode Statistics Accident and Emergency
  3. Hospital Episode Statistics Outpatients
  4. Bespoke Extract : SUS PbR A&E
  5. Bespoke Extract : SUS PbR APC Episodes
  6. Bespoke Extract : SUS PbR APC Spells
  7. Bespoke Extract : SUS PbR OP
  8. Hospital Episode Statistics Critical Care
  9. Emergency Care Data Set (ECDS)
  10. Bespoke Monthly Extract : SUS PbR A&E
  11. Bespoke Monthly Extract : SUS PbR APC Episodes
  12. Bespoke Monthly Extract : SUS PbR OP
  13. Bespoke Monthly Extract : SUS PbR APC Spells
  14. Hospital Episode Statistics Accident and Emergency (HES A and E)
  15. Hospital Episode Statistics Admitted Patient Care (HES APC)
  16. Hospital Episode Statistics Critical Care (HES Critical Care)
  17. Hospital Episode Statistics Outpatients (HES OP)

Objectives:

Purpose - Overall Context
The National Cancer Vanguard covers three systems:
• Greater Manchester (led by The Christie NHS Foundation Trust)
• North West and South West London (led by The Royal Marsden NHSFT)
• West Essex, North Central and North East London (led by University College London Hospitals NHS Foundation Trust)
Note that the University College London Hospitals NHS Foundation Trust will not be permitted to access any data under this agreement.


The vanguard has been tasked with radically restructuring cancer care systems to place the patient at the heart of service planning and delivery. The case for change has been clearly highlighted in the NHS Five Year Forward View, through the three gaps, namely:
• Health and Wellbeing Gap – 1 in 2 people will get cancer in their lifetime. The incidence of cancer is increasing by about 2% per year and is the biggest cause of death from any disease in every age group. The shift in lifestyle in increasing the age standardised risk of cancer.
• Care and Quality Gap – cancer patients are diagnosed too late, survival is poor, cancer is not prevented where it can be and living with and beyond cancer is not consistently prioritised. Patients receive inconsistent quality of care, long waiting times, widely varying outcomes and often poor experience.
• Funding Gap – the cost of delivering the capacity required to bring forward diagnosis and shift follow up care into the community and other settings is currently prohibitive.

To tackle these gaps, the vanguard has a programme of works which fall under three categories:
• Transforming the clinical model of delivery refocusing funding across cancer pathways away from costly specialist treatment of late stage cancers to prevention and diagnosis and reducing unwarranted variation – consistently applying best evidence based practice including access to 24/7 end of life and palliative care and supporting patients living with and beyond cancer;
• Changing the system architecture by:
- creating sector-wide single cancer budgets and lead provider models within the context of a system leader, underpinned by financial incentives that transform cancer care;
- developing robust governance models, supported by appropriate organisational form, that drive shared accountability across system; and
- working with commissioner colleagues to radically reform and strengthen commissioning processes in order to streamline accountabilities and drive forward service improvement.
• Implementing enabling infrastructure to include outcomes measurement and shared reporting co-created with patients / carers and clinicians supported by shared MDT level balanced scorecards, data capture standards, and analytical capabilities to drive best practice evidence based decision making and outcomes commissioning.


Purpose - Specific work streams requiring data from NHS Digital
Through the programme of works noted above, there are three key purposes of why data is needed, which fall under two main work streams:
1) Creation of new commissioning model for cancer services (changing system architecture) [SUS data]
a) Scoping analytics: When determining the population cohort (demographics, location, disease type) and pathways that will be covered by a new payments model we will need to perform comprehensive analysis to understand the current population and existing pathways.
b) Model building: Once we have decided on a payment mechanism and the patient cohort and pathways covered by the new commissioning model, we will need to build a financial and activity model. This will need to project the impact of the new commissioning model by the various organisations impacted, and be able to calculate payments. This model would also be used to form the basis of contracts over a multiple year period.

2) To perform pan-vanguard data analytics to aid decision making (implementing enabling infrastructure) [HES data via HDIS]
a) Performance reports: This will include production of comparable metrics the Vanguard providers of cancer care including NHS Providers and CCGs. The aim of these comparable analyses will be identify areas for improvement overall within the Vanguard, or system within the Vanguard, and also look for areas of variation. This will then, be used to inform the work programme of the Vanguard to improve patient’s cancer care and reduce variation. The learning from this approach will be shared nationally to inform the development of Cancer Alliances.

As a Vanguard, there is an expectation that any models/tools built must be replicable so that they could be rolled out nationally.


Data:
The commissioning model work will rely on SUS data as this is the dataset relating to commissioning payments throughout the NHS.
The Data Analytics work will use HES data via the HDIS tool as this permits rapid quantitative analysis without the need to store a large amount of record-level HES data.

National data is required rather than just London and Manchester data because cancer patients may travel some distance to receive care in specialist centres, and to permit the development and evaluation of models/tools which can be used across the country rather than limited to specific areas only.

Yielded Benefits:

- Improvements to patient care through a number of projects including:- a) Successful prioritisation of bid for transformation funding and ongoing support for following projects in West London - Introduction of RAPID prostate cancer pathway, improving 62 day (GP) performance, and reducing invasive biopsies and resulting complications - Redesigned colorectal cancer pathway, resulting in faster pathway, with better triaging of patients and decreasing the need for invasive colonoscopies - Roll out of national lung optimum pathway at several providers resulting in faster diagnosis for these patients. - Pilot of lung screening rolled out in West London, identifying areas with highest need and expected resource b) Published suspected cancer 2 week wait volumes compared with overall outpatient activity to enable informed discussions around increase in demand. (i.e overall activity vs 2 week wait, so changes in case-mix of urgency rather alongside overall increases) c) Analysis of re-admission rates to inform bid for smoking cessation services in hospitals, which could lead to a decrease re-admission rates and improve patient outcomes and reduce costs.

Expected Benefits:

The Cancer Vanguard will develop programmes to raise public awareness and work collaboratively with partners in education, health and social care to shift the focus towards prevention and early diagnosis, to provide a recovery package to aid those living with and beyond cancer and to greatly improve care at the end of life.

Placing patients at the heart of the work across whole organisational boundaries provides an opportunity to make a real difference in cancer care. The Cancer Vanguard will work with patient groups and patient representatives to ensure that they, their families and carers are meaningfully involved at every stage in shaping how the new system will work.

Working together across a whole pathway will make a real difference in the way resources are used, and enable clinicians to provide patients with the best cancer care available anywhere in the world.


1a and 1b) Scoping analytics & Model building:
Many of the interventions needed for people affected by cancer are the same as those living with other long term conditions. Commissioners should take this into account by commissioning interventions required by the individual rather than dealing with the cancer in isolation. The commissioning and provision of services to support people affected by cancer may or may not need to be cancer specific but does need to follow the principles of person centred care as laid out in the NHS England Long Term Conditions Framework. A new model of commissioning would reflect this need.

Scoping analytics and model building will form a pivotal part of the new commissioning model. New models of care are a core component of helping the NHS become more sustainable and are key in the system delivering the aims of the Five Year Forward View. Specifically, the key benefits of a new cancer commissioning model are:
• Being able to link payment for cancer services to outcomes that are in the best interest of patients (such as improving experience, quality of life and clinical outcomes), rather than the current system which pays for services as inputs and outputs.
• Using the commissioning model to optimise pathways, by incentivising collaboration between providers and reducing duplication in care. This will carry a financial saving to the system but also improve patient experience.
• Enabling commissioning for cancer to be less fragmented than the current system which can help prioritise key areas for investment and enable longer term planning.



2a) Performance reports:
In October 2014 the NHS in England published its strategy for the next five years (the Five Year Forward View). This strategy made it clear that new ways of organising NHS care would need to be developed in the coming years to meet the challenges faced by the NHS.

In the light of this strategy all NHS organisations were asked to put themselves forward to test some of these new ways of organising care (as so-called vanguards). At the same time, an independent cancer taskforce appointed by the NHS was publishing its recommendations, which included that a new way of providing cancer care under a single lead organisation for an entire region should be tested.

The production of comparative metrics across London & Greater Manchester will enable the identification of areas which need improvement across a system, and also those areas within a system with large variation. This will then influence the priorities and service improvements which Vanguard implements, which will in turn lead to a reduction in variation and improved cancer patient care.

As well as system led change the work is also expected to influence improvement within individual providers of cancer care, given that the benchmarked outputs will be shared with NHS stakeholders across the cancer pathway. Previous experience with other data sources has indicated that this type of approach facilitates local improvement as it highlights where a particular provider is performing relatively badly compared to other similar providers.
In addition the methodology for any work undertaken by the Cancer Vanguard can be shared with the emerging Cancer Alliances nationally meaning the benefit of this work should be seen nationally.


The benefits should start to be seen during the financial year 2017-2018, onwards.

Outputs:

1a) Scoping analytics:
The outputs of the scoping analytics will be in the form of aggregated counts of activity for outpatient referrals and attendances, inpatient admissions, and A&E attendances by dimensions such as Provider, CCG, GP Practice, Cancer Type, Age, Ethnicity, Referral Source and Clinical Unit.
Where the aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide.
These aggregated outputs will be shared with providers and CCGs within the 2 Cancer Vanguards.

1b) Model building:
The outputs of the model building will be in the form of an interactive tool showing aggregated counts of activity and cost for cancer pathways.
Where the aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide.
These aggregated outputs will be shared with providers and CCGs within the 2 Cancer Vanguards.

2a) Performance reports:
The analysis of the defined metrics, will feed into the wider Pan-London & Greater Manchester metrics being developed for Cancer Services. As well as tabulated outputs, this also often includes a graphical view of the data along with any key commentary, limitations and also the source of the data. Where aggregated outputs contain small numbers, these will be suppressed in line with the HES Analysis Guide.
The specific defined metrics will be developed in conjunction with the Vanguard tumour specific pathway groups. This will include discussion of metrics where outputs have already been produced to establish the frequency any refresh of the data.
Illustrative examples of the types of analysis which would be undertaken are-
• Counts of numbers of specialist surgical procedure, either limited to cancer diagnosis or split by diagnosis type where the same type of surgery is undertaken for non-cancer diagnosis.
• Counts & rates of surgical approach (e.g Open compared to Minimal Access Approach)
• Emergency readmission rates within discharge of surgical procedures for a defined number of days (previous national analysis has used 28 or 30 days)
• Day case of overnight stay and immediate reconstruction rates for surgical procedures where applicable. For example breast cancer mastectomies.
This list of metrics is not exhaustive as it is expected that individual pathway groups will identify additional priorities which may change over time.

For all analysis the default position would be to run the analysis for the whole of England, both to enable comparisons with the England rates, and also potentially to share other regional breakdowns of the data to support the introduction of Cancer Alliances nationally.

The target date for these outputs is likely to be in early 2017.

Processing:

Only substantive employees of the Data Controllers (The Royal Marsden NHS Foundation Trust and The Christie NHS Foundation Trust), and the Data Processor (KPMG) will access the data. At no point will any of the data included in this agreement be permitted to be linked with any other record level data, nor will the SUS data be linked to the HES data.
Any outputs beyond these substantive employees will contain data only where that data is aggregated with small numbers suppressed in line with the HES Analysis Guide.

Note on the role of the Data Processor:
KPMG has been engaged to act as a Data Processor for both Data Controllers (Royal Marsden NHSFT and The Christie NHSFT). KPMG’s work is constrained to purpose 1 (the Creation of new commissioning model for cancer services), and will use only SUS data, with no access to HES data.



The processing activities support defined purposes as follows:

1) Creation of new commissioning model for cancer services (changing system architecture) [SUS data only]

The model and any tools created for this purpose will be developed by the Data Processor and then be delivered to the Data Controllers (The Royal Marsden NHSFT and The Christie NHSFT).
The raw SUS, pseudonymised, record-level extracts will be stored in a secure database, which is specifically designed for the purpose with suitable security and administrative controls to govern access. Once the model/tools are developed, the record-level data will be required to allow the model/tools to function correctly. For this reason, the raw SUS (pseudonymised, record-level extracts) will be securely transferred to both The Royal Marsden NHSFT and The Christie NHSFT.

Aggregated level database views will be created from the record-level extracts to produce counts of the SUS activity and sum of cost by dimensions such as provider, CCG, age, sex and cancer type. These aggregated database views will then be used to feed data into analysis, model building and performance reporting. Any outputs from the model/tool – that will be shared outside of the Royal Marsden NHS FT and The Christie NHS FT will be aggregated data only (with small numbers suppressed in line with the HES Analysis Guide). The aggregated database views will also be used to feed data into analysis, model building and performance reporting as described below.


1a) Scoping analytics tool
This analysis tool will enable the Cancer Vanguards and their provider Trusts and CCGs to understand the current population and existing pathways to determine the population cohort (demographics, location, disease type) and pathways that will be covered by a new payments model.

1b) Model building
This will involve the build of a data model to extract the payment mechanism and patient cohort and pathways covered by the current commissioning model (both activity and cost), and calculate the payments for treating those patients under the pathways in scope.
The data will be used to count outpatient referrals and attendances, inpatient admissions, and A&E attendances by dimensions such as Provider, CCG, GP Practice, Cancer Type, Age, Ethnicity, Referral Source and Clinical Unit.


2) Pan Vanguard data analytics: [using HES data only]
The Data Controllers (Royal Marsden NHSFT and The Christie NHSFT) will analyse hospital records (HES data held in HDIS) for this purpose.
2a) Performance reports
Quantitative performance reports will be generated using data from the HDIS system. The Royal Marsden NHSFT and The Christie NHSFT are permitted to download aggregated reports (not record-level) from HDIS which contain small numbers. All small numbers will be suppressed in line with the HES Analysis Guide before any reports are shared to any third party (including the Data Processor). These will then be stored on Royal Marsden and The Christie servers. Data will then be analysed using tools such as Excel.

Project 4 — DARS-NIC-147830-XVK36

Type of data: information not disclosed for TRE projects

Opt outs honoured: N

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Purposes: ()

Sensitive: Sensitive

When:2016.04 — 2016.08.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cohort Event Notification Report

Objectives:

Purpose The data supplied by the NHS IC to Institute of Cancer Research will be used only for the approved Medical Research Project identified above.