A Comprehensive approach to International Cancer Survival Benchmarking – Assessing the Impact of Covid-19 on Cancer

The International Agency for Research on Cancer (IARC) the specialized cancer agency of the World Health Organisation, requires data from NHS England for inclusion in the study titled - A Comprehensive approach to International Cancer Survival Benchmarking – Assessing the Impact of Covid-19 on Cancer.

The International Cancer Benchmarking Partnership (ICBP) is a research collaboration set up in 2009. The analysis and data management are provided by the IARC, while other partners in the collaboration provide other roles (for example, Cancer Research UK provide the programme management support). The ICBP provides a unique opportunity to compare the burden of cancer internationally, focusing on countries with a high standard of cancer registration and using detailed data to measure variation in survival, incidence and mortality between these countries. The partnership brings together clinicians, policymakers, researchers and data experts to explore factors that can explain identified variation, identify best international practice, and generate insights needed for policy and practice change. The main aim of this project is to provide continuous support on cancer and COVID-19 in particular for jurisdictions and nations of the ICBP through the development of a surveillance framework and researching this to evaluate the potential impact of the COVID-19 pandemic on the access to, and availability of, cancer diagnostic services using the most up-to-date population level data.

The objectives are:

• Develop a surveillance framework: evaluate the potential impact of the COVID-19 pandemic on cancer diagnosis and outcome

• Produce public-health relevant statistics and estimates, incl. missed cases, stage shift (focus on 2020 impact) estimation of cancer, and potential impact on survival

• Provide perspective on potential indirect impact of the COVID pandemic: disruptions to cancer services and pattern of patients with cancer at the population level

Pseudonymised Cancer registry data is required to enable IARC to look at the type and stage of cancers during CV19, how these were treated and the survival time.

The data will be minimised as follows

Only the data necessary for the planned analyses are requested. Potentially indirectly identifiable data are reduced to a minimum:

• Cancer Registration Data will be provided from 2013 onwards to latest available.

• Date of birth is not requested and is replaced with age at diagnosis in years (with two decimal places).

• Date of diagnosis is only required as year and month (to allow for trend analysis), in combination with duration of survival in days (one of the main outcomes of this project) and age at follow-up or death (with two decimal places).

• Treatment dates will be replaced by intervals in days between date of incidence and date of first course of treatment (surgery, radiotherapy, systemic therapy, hormone therapy).

IARC are the Sole Data Controller who will also process the data being shared under this agreement.

Data will be hosted entirely on IARC premises, including backups. IARC does not use Cloud services. No backup copy leaves the Organisation. No external company is involved.

No other organisation is involved accessing the data, other than those listed as controller/ processor on the agreement.

In line with the National data opt-out policy, opt-outs are not applied by NHS England because the data is not Confidential Patient Information as defined in sections 251(10) and (11) of the National Health Service Act 2006.

Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out.

No data will flow to NHS England for the purposes of this Agreement.

NHS England will provide the relevant records from the NDRS Cancer Registration datasets to IARC. The data 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.

Using the updated cancer incidence data from population-based cancer registry of ICBP jurisdictions, IARC will assess the changes in incidence of cancer during the COVID-19 pandemic. The basis of the analysis will consist of data on new cancer cases diagnosed in the ICBP jurisdictions. The new cancer cases will be grouped into five-year age groups, sex, stage at diagnosis and cancer types, and where possible by socioeconomic or ethnic groups. Cancer types will be converted from ICD-O-3 to ICD-10 groups similar to the list as reported by GLOBOCAN2020 (https://gco.iarc.fr/today/data-sources-methods#cancerdictionary).

Based on the cancer data provided, IARC will assess the impact of diagnostic delay on new cancer diagnoses during the study period and compare these to the expected cases predicted using historical data. Monthly expected cases will be estimated based on age, sex, and period (in month and year) by cancer type and jurisdiction. In addition to this, background changes in cancer incidence linked to birth cohort or period effect will be included to the model.

In a second step, IARC will assess the impact of diagnostic delay on stage distribution of cases diagnosed before and during the COVID-19 pandemic to account for the disruption of early detection strategies including national screening programmes due to COVID-19. Similar statistical methods as above will be used, and analyses will be stratified by sex, age, sub histological group, and jurisdiction (wherever possible).

Finally, 1-year net survival (NS) for cases diagnosed in 2020 will be calculated using the PoharPerme estimator (stnet function) to estimate cancer survival. Additionally, the 1-, 3-, and 5-year net survival NS for cases diagnosed between 2015-2019 will be calculated to benchmark survival between ICBP countries. The background mortality in the general population will be obtained from the country-specific lifetables of all-cause mortality for the years 2015-2020.

All results will be interpreted in light of COVID-19 severity, Non-Pharmaceutical Interventions (NPI), strictness and consultation with local leads of cancer service changes during the COVID19 pandemic in alignment with other commissioned work in ICBP. Non-Pharmaceutical Interventions (NPIs) including regional or national lockdowns vary widely between countries and jurisdictions, thus IARC will use data from all jurisdictions in the seven ICBP countries, whenever possible.

The data disseminated for this research will not be transferred to any other location.

The data will be stored on servers at IARC.

The data will be accessed by authorised personnel via remote access. The data will remain on the servers at IARC at all times.

Personnel are prohibited from downloading or copying data to local devices.

The data will not leave the EEA at any time

Access is restricted to individuals within the CSU department of IARC who have authorisation from IARC's Principal Investigator. All such individuals are substantive employees/personnel of IARC.

Employees/personnel or agents of IARC are permitted to access pseudonymised data only.

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: aggregated population counts, aggregated certified deaths from cancer, population life tables (all-cause mortality probabilities).

Analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Analysts/researchers from IARC will analyse the data for the purposes described above.

Findings from the study will be submitted to high-impact peer-reviewed academic journals and presented in international meetings and conferences. An online tool (IARC Global Cancer Observatory (GCO) on which IARC have previously provided results from the ICBP SURVMARK-2 study) will be updated using the most up to-date data from this research.

The study will aim to produce public-health relevant statistics and estimates, incl. missed cases, stage shift (focus in 2020 impact) and provide perspective on potential indirect impact of the COVID pandemic: disruptions to cancer services and pattern of patients with cancer at the population level.

The outputs will not contain any record level 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 project is hoped to provide a perspective on the potential indirect impact of the COVID pandemic on countries, based on observed changes in cancer diagnosis and pattern of patients with cancer at the population level during the pandemic to plan mitigation strategies. This international comparative study will provide important insights on the indirect impact of COVID-19 on cancer services, burden and best practice, drawing on the wealth of variation in the organisation and provision of health care, which vary more across countries than within countries.

It is hoped that the findings will offer valuable information to support the current UK Government’s policy on 'Building Back Better' and support national or international projects that aim to assess the impact of COVID-19 and ensure minimal long-term impact of the pandemic. Beyond the lifetime of this project, ICBP-C19 will inform follow-up work in this area and development of a protocol to the survival analysis of cancer diagnoses during the pandemic.

Yielded Benefits is not a requirement for new applications.