Cancer Stats Future: Incidence Data Request

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Expected output

[2 paragraphs unchanged] • An indicator on the age-standardised incidence rate of late-stage disease as a tool to assess progress in the reduction of late-stage cancers over time after accounting for other population factors. This will be done at the England/national level to look at annual trends over time. [8 paragraphs unchanged]

Benefits reported

[1 paragraph unchanged] Clinical staff, the public, academic and other researchers, rely on Cancer Intelligence [6 words unchanged] able to access data about cancer on a single platform. In addition, we the controller know that people affected by cancer turn to our statistics pages to help them understand the condition which they or their loved one is affected by. If we the data controller were unable to continue this work, fewer people would have access to [19 words unchanged] established scientific brand, as well as a high-profile charity. The public approach us the controller for information about cancer, and therefore, it is in keeping with our the controller's remit that Cancer Intelligence can continue to publish statistics about cancer incidence for the UK.

Unchanged: Objective for processing, Processing activities, Expected measurable benefits.

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Objective for processing

[5 paragraphs unchanged] • To answer statistical queries submitted by the public. public (including patients, healthcare professionals, researchers). [7 paragraphs unchanged] • Limited to Data between 1999 and 2021. 2022. [8 paragraphs unchanged]

Processing activities

[1 paragraph unchanged] NHS England will provide the relevant records from the NDRS Cancer Registrations datasets to CRUK. The Data will: will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient. • contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient. [3 paragraphs unchanged] The Controller(s) Controller must confirm and provide evidence upon audit by NHS England that access [7 words unchanged] data security obligations within this DSA and the Data Sharing Framework Contract. [8 paragraphs unchanged] Remote processing will be from secure locations within the UK . The Data data will not leave England/Wales the UK at any time. time [7 paragraphs unchanged]

Unchanged: Expected output, Expected measurable benefits, Benefits reported.

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Objective for processing

The Data Recipient will access de-personalised cancer registration data to produce statistics for a range of stakeholder, including the public, health professionals and teams within Cancer Research UK, about the state of cancer in the UK. The data recipient will utilise the latest cancer incidence data for England, broken down by cancer site, gender, age group, morphology for the following purposes: Cancer Research UK (CRUK) requires access to NHS England Data for the following project: Cancer Stats Future: Incidence Data. 1. Produce a range of key statistics (including trends) on cancer incidence for England, broken down by sex, age, country, cancer site CRUK, is one of the few organisations that acquires, collates, combines, and publishes statistics on cancer incidence for the whole of the UK. Such data are necessary to provide several stakeholders with an idea of the state of cancer in the UK. Clinical staff, the public, academics, and other researchers rely on Cancer Intelligence to continue their work by accessing data about cancer on a single platform. 2. To answer statistical queries submitted by the public. CRUK are requesting the latest cancer incidence Data for England, broken down by cancer site, gender, age group, and morphology. CRUK require the Data requested to make valid comparisons with other UK countries. Without this level of detail, much of the team's work would not be possible. For example, without the detail required to investigate trends about cancers that affect children, or certain cancer sites, the value of the statistics produced would be much less valuable. 3. To update the cancer intelligence risk factor work. The following is a summary of the aims of the project provided by CRUK: All statistics will be produced and published in a manner compliant with ISB 1523 Anonymisation Standards for Publishing Health and Social Care Data. • To produce a range of key statistics (including trends) on cancer incidence for England, broken down by sex, age, deprivation, and stage of diagnosis. • To answer statistical queries submitted by the public. • To produce an indicator on the age-standardised incidence rate of late-stage disease as a tool to assess progress in the reduction of late-stage cancers over time after accounting for other population factors. The following NHS England Data will be accessed: • NDRS Cancer Registrations – necessary to produce statistics for a range of stakeholders, including the public, health professionals, and teams within CRUK, about the state of cancer in the UK. The level of the Data will be: • Pseudonymised. • Aggregated, unsuppressed. The Data will be minimised as follows: • Limited to Data between 1999 and 2021. • Limited to conditions relevant to the project identified by specific ICD codes. CRUK is the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above. The lawful basis for processing personal data under the UK GDPR is: Article 6(1)(f) - processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party. CRUK has determined the processing is necessary for its legitimate interests in being able to provide tools and services that will benefit healthcare organisations. The lawful basis for processing special category data under the UK GDPR is: Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

Processing activities

CRUK request aggregated incidence data from the Cancer Registry Tumour tables are required. No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA). An aggregate table is requested for frequencies for cancer incidence in England, broken down by diagnosis year, 4-digit cancer site ICD-10 code, 5-year age group and sex, for the years 1995 to 2019. NHS England will provide the relevant records from the NDRS Cancer Registrations datasets to CRUK. The Data will: For stage at diagnosis breakdowns, data are requested for individual years for 2014 to 2019 for the whole of England, and for 2014-2019 combined for Cancer Alliances: • contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient. File of incidence data for England covering the years 2014-2019 split by year, 3-digit ICD10 code, sex, 5-year age group and stage at diagnosis The Data will not be transferred to any other location. File of 3-digit ICD10 code, sex, 5-year age group, stage at diagnosis and cancer alliance for the entire cohort 2014-2019 The Data will be stored on servers at CRUK. Stage data to cover as many sites as possible which have enough completeness, such as the sites used in the NCRAS/PHE publication: https://www.cancerdata.nhs.uk/stage_at_diagnosis The Data will be accessed by authorised personnel via remote access. When the data are prepared and organised, they can be accessed by the Analysis Branch using R Studio, the software for which analyses are also undertaken. A number of statistical methods are employed to produce the set of outputs described above. These include :•Generating frequency tables, calculation of proportions (for example, x% of cancers are diagnosed for those individuals aged over the age of 70). Age-standardised rates of cancer incidence with confidence intervals by gender, age groups, and countries. To summarise, the data will be combined with other Incidence data, and other sources of data including mortality, survival, risk-factor data, in order that analyses can be undertaken to achieve the objectives. Briefly, data will be stored in the CSF database. The security and information governance arrangements that are in place to protect the data are outlined in the accompanying System Level Security Policy The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract. Data will be acquired, stored, managed and accessed as described with the System Level Security Policy (SLSP). Staff are aware of the guidelines for undertaking statistical disclosure control (see Section 6), to protect the confidentiality of data following the publication of statistics. A number of procedures are in place to ‘clean’ and ‘check’ the quality and integrity of the data. A system of ‘checking’ statistics (e.g. in the event that unusual trends appear in the statistics produced) is in place to ensure that Cancer Intelligence only publish robust statistics. For remote access: • Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; • Access controls granting users the minimum level of access required are in place; • Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; • Multifactor authentication (MFA) is required for remote access; • Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access; • All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose). The Data will not leave England/Wales at any time. All personnel accessing the Data have been appropriately trained in data protection and confidentiality. The aggregated information derived from the Data will be combined with aggregated data from other sources, such as: • Other countries’ aggregate incidence data - to compare cancer incidence rates across countries, and to prepare a total measure of cancer incidence for the UK as a whole) • Other sources of data related to cancer (such as prevalence of smoking, alcohol consumption etc.) There will be no requirement and no attempt to reidentify individuals when using the Data. Analysts from CRUK will process/analyse the Data for the purposes described above. Upon receipt of further data, data already held is required to be retained for 6 months for data cleaning and comparison purposes.

Expected output

CRUK would also like to request the latest data available as part of this application (currently under this agreement we have data up to 2018, we would also like to receive 2019 and 2020 if available). CRUK need the same data as we always received under this application, with additional breakdowns for stage at diagnosis and deprivation quintile. For the exact data specification, please see the protocol and data dictionary attached to this application. The expected outputs of the processing will be: Specific Outputs: Acquiring these data will enable our Cancer Intelligence team to (1)produce a • A range of statistics which will be updated for Incidence on the Cancer Research UK website and (2) respond to enquiries from the public, including patients, health care professionals, and researchers about cancer statistics in the UK. (https://www.cancerresearchuk.org/health-professional/cancer-statistics/incidence). • An indicator on the age-standardised incidence rate of late-stage disease as a tool to assess progress in the reduction of late-stage cancers over time after accounting for other population factors. This will be done at the England/national level to look at annual trends over time. • Calculations of the number and proportion of cancer cases attributable to various risk factors in England (also combined with devolved nations to obtain corresponding UK-level results). The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived. The counts for morphological subtypes in oesophageal and ovarian cancers will not be published. The outputs will be communicated to relevant recipients through the following dissemination channels: • Public reports • Cancer Research UK website The outputs are expected to be produced a few months after the data has been received (from all UK countries) and processed by the analysts. A number of key outputs have been produced in the past using this Data, including: State of the Nation, Report on Preventable Cancers. Similar outputs are produced every year.

Expected measurable benefits

As a minimum, statistics depicting the ‘state of cancer’ necessarily include rates [6 words unchanged] combined with other publicly available data, such as prevalence of risk factors such as smoking (smoking and obesity rates, alcohol consumption etc., etc.), incidence and mortality rates draw a comprehensive picture from which a number of conclusions and public health recommendations can be drawn from. A number of key outputs have been produced, including: State of the Nation, Report on Preventable Cancers. CRUK monitor internet access to the statistics produced using Incidence data. Average visits across incidence URLs for last three years is 581,259 by an average of 330,718 individuals. The success and outreach of these statistics depends on the Cancer Intelligence team being able to provide up-to-date data about the state of cancer in the UK. We also monitor internet access to the statistics we produce using Incidence data. Average visits across incidence URLs for last three years is 581,259 by an average of 330,718 individuals. The findings of this project are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users regarding cancer. The success and outreach of these statistics depends on the Cancer Intelligence team being able to provide up-to-date data about the state of cancer in the UK. The use of the data could: CRUK require the granularity of the data requested in order to organise the data and make valid comparisons with other UK countries. Without this level of detail, much of our work would not be possible. For example, without the detail required to investigate trends about cancers that affect children, or certain cancer sites, the value of the statistics we produce would be much less valuable. • help the system to better understand the health and care needs of populations. As a result, we know that some of the frequencies for tabulations will be small, and below 5. • lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience. However, to protect the confidentiality of cancer patients, we deploy a number of statistical disclosure control techniques to ensure that no statistics are published which could compromise patient confidentiality. The standards of publication adhere to the ISB Standard for Publishing Health and Social Care Data1 and the ONS guidelines for producing health statistics2. • advance understanding of regional and national trends in health and social care needs. In addition, CRUK employ publication standards that often involve rounding or simplifying the statistics we produced so that they are published in a way the public understand, for example, using the phrase ‘1 in 4’ to describe ’25 per cent’. This further protects patient confidentiality when we have to work with small frequencies. • advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes. It is hoped that through publication of findings in appropriate media, the findings of this project will add to the body of evidence that is considered by the bodies, organisations, and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to cancer patients.

Unchanged: Benefits reported.