CONCORD Programme (ODR1617_033)

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Datasets: + NDRS Cancer Pathway; + NDRS Somatic Molecular Dataset; + NDRS Systemic Anti-Cancer Therapy Dataset (SACT)

Objective for processing

On 1 February 2023, NHS Digital merged with NHS England. NHS England has assumed responsibility for all activities previously undertaken by NHS Digital. The merger was completed by a statute change. Any reference made to NHS Digital within this Data Sharing Agreement is in reference to the merged organisation known as NHS England. This is a request from the Cancer Survival Group (CSG) at the London School of Hygiene and Tropical Medicine (LSHTM) to access NHS England data for the purpose of the following research project: CONCORD Programme for the global surveillance of cancer survival (previously ODR1617_033). This is a request from the London School of Hygiene and Tropical Medicine (LSHTM) to extend an Agreement (ODR1516_330) that was previously managed by Public Health England (PHE) before its dissolution in October 2021. CONCORD is a long-term, observational public health research programme for the global surveillance of trends in population-based cancer survival. The Cancer Survival Group originated the CONCORD programme in 2000 and has operated it continuously since then. The programme has gradually expanded its scope in response to international policies and guidance and requests from cancer registries, e.g. the inclusion in CONCORD-4 of cancers of the lip and oral cavity, which are a particular concern in India. This request relates to the CONCORD Programme. CONCORD is a worldwide cancer surveillance programme, run and managed by LSHTM, that looks specifically at trends in cancer survival. CONCORD began in 2000, and since that time the study has gradually expanded its scope in response to international policies and guidance. At the United Nations General Assembly High-Level Meeting in New York in September 2011, the governments of 113 countries set new strategic objectives for worldwide control of non-communicable diseases. The UN declaration emphasised the need for broader research to support better policy for prevention and control of all non-communicable diseases, including cancer, because of their rapidly growing impact on public health, especially in developing countries. At the United Nations General Assembly High-Level Meeting in New York in September 2011, the governments of 113 countries set new strategic objectives for worldwide control of non-communicable diseases (such as cancer). The UN declaration emphasised the need for broader research and better policy for preventing and controlling all non-communicable diseases, including cancer, because of their rapidly growing impact on public health, especially in developing countries. Following the World Health Assembly in 2012, the governments of 119 countries agreed on a set of 25 indicators and a voluntary global target to reduce “premature deaths” (defined as deaths in people aged 30-69 years) from all non-communicable diseases by 25% by 2025. It was acknowledged that achieving this target for cancer would require more effective prevention, to reduce cancer incidence, and more effective health systems, to improve cancer survival. Following the World Health Assembly in 2012, the governments of 119 countries agreed on a set of 25 indicators and a voluntary global target to reduce premature deaths (defined as deaths in people aged 30-69 years) from all non-communicable diseases by 25% by 2025. Achieving this target for cancer will require more effective prevention to reduce the incidence of cancer, and more effective health systems to improve survival. The CONCORD programme provides the population-based and internationally comparable survival estimates that are required to assess the overall effectiveness of healthcare systems around the world in managing cancer patients. It allows the assessment of how countries compare on some of the 25 indicators and global targets set by the World Health Assembly. The CONCORD programme provides the information required to assess the effectiveness of healthcare systems around the world in managing cancer patients and allows the assessment of how individual countries compare on the 25 indicators and global targets set by the World Health Assembly. The CSG has previously requested and obtained identifiable Cancer Registration data from the National Disease Registration Service (NDRS) and predecessor bodies for the three previous cycles of the CONCORD programme. For the first CONCORD study and CONCORD-2, the data included all adults (15-99 years) resident in England who were diagnosed with a primary neoplasm of the breast, colon, rectum, lung, ovary, prostate, stomach, liver or cervix, or leukaemia (and in CONCORD-2, also acute lymphoblastic leukaemia in children), between 1 January 1990 and 31 December 2009. The CONCORD programme aims to inform national and global policy for cancer control: For CONCORD-3, the data included all adults (15-99 years) resident in England who were diagnosed with a primary neoplasm of oesophagus, stomach, colon, rectum, liver, pancreas, lung, melanoma, breast (women), cervix uteri, ovary, prostate or brain, or a lymphoma or leukaemia, between 1 January 2000 and 31 December 2014, and children (0-14 years) who had been diagnosed with a leukaemia, lymphoma or brain tumour during the same period. • To provide quantitative and directly comparable estimates of cancer survival in many countries worldwide, for 15 malignancies that are common in adults, and leukaemia, lymphoma, and brain tumours in children using individual data from population-based cancer registries. CONCORD-4 • To maintain systematic global surveillance of cancer survival, by documenting worldwide trends and inequalities in cancer survival. This request relates to the fourth cycle of the CONCORD programme. • To enable examination of the underlying causes of survival differences. This agreement, covering CONCORD-4, seeks to extend the calendar period during which international comparisons of survival will be performed, to include patients diagnosed with cancer during the period 1990-2021 or the latest available year (with follow up to the latest available year). This will cover 22 adult cancers and all childhood cancers: • To derive measures such as the population “cure” fraction and the number of avoidable premature deaths. For adults, the Cancer Survival Group requests data on 22 cancers or groups of cancers that represent 85-91% of all cancers in adults (the proportion in each country varies with the national income group of that country, as assigned by the World Bank): lip and oral cavity, oesophagus, stomach, colon, rectum, liver, gallbladder, pancreas, larynx, lung, melanoma of the skin, breast (women), cervix, corpus uteri, ovary, prostate, kidney, urinary bladder, brain and thyroid, plus lymphomas and leukaemias. Individual tumour registration data have already been submitted to CONCORD-4 for more than 50 million patients in more than 50 countries. To support them in achieving their aims LSHTM has previously requested identifiable Cancer Registration data from the National Disease Registration Service (NDRS) for both the CONCORD-2 and CONCORD-3 cohorts, the two cohorts that collectively constitute the CONCORD Programme. The malignancies studied in children in CONCORD-3 included the three most common groups: leukaemias, lymphomas and brain tumours. In CONCORD-4, the CSG now seeks to extend the agreement to include all childhood cancers. The request for data on all children is to support the monitoring of progress toward the World Health Organisation's Global Initiative for Childhood Cancer (GICC, 2018). The main target of GICC is to improve five-year survival for all cancers in children combined from 30% to 60% by 2030. St Jude Children's Research Hospital is the national specialist centre for childhood malignancy in the USA, and its leaders prompted WHO to issue the GICC. Childhood cancers are classified in 12 major and 14 minor sub-groups. St Jude has contributed to definition of the sub-groups within which survival will be estimated, but the analyses have been designed and will be carried out only by the Cancer Survival Group at LSHTM, in London. CONCORD-4 is the only research programme that can produce these estimates on a global scale, and has already been provided with individual data by over 200 cancer registries world-wide for over 400,000 children diagnosed with a malignancy. For the CONCORD-2 cohort, this data was inclusive of all English residents aged between 15- and 99, who also received a diagnosis of malignant, invasive or primary neoplasm of the breast, colon, rectum, lung, ovary, prostate, stomach, liver or cervix; or leukaemia between 01/01/1990-31/12/2013. VENUSCANCER For the CONCORD-3 cohort, this data was inclusive of all adults residing in England who received a diagnosis of one or more of the following neoplasms: Oesophagus, Stomach, Colon, Rectum, Liver, Pancreas, Lung, Melanoma, Breast, Cervix Uteri, Ovary, Prostate, Brain, Lymphomas and Leukaemias between 01/01/2000-31/12/2014. Children aged between 0-14 who had received a diagnosis of one or more of the following neoplasms during the same time were also included in the cohort: Brain, Lymphomas and Leukaemias. Within CONCORD-4, and for the first time in this cycle of the CONCORD programme, VENUSCANCER represents a more detailed analysis of patterns of care and survival for the three most common cancers in women (breast, cervix and ovary). The purpose is to explain the wide international inequalities in survival that the CONCORD programme has identified for these cancers. It is not a separate study. The data required for VENUSCANCER will support a more detailed analysis of patterns of care and survival for a subset of women diagnosed with one of the three most common cancers in women (breast, cervix and ovary) to be included in CONCORD-4. This component of the programme is focussed on aims #3 and #4 below. This will enable the CSG to evaluate some of the potential explanations for the international inequalities in survival for these three cancers revealed by the CONCORD programme so far. For this component – and for a single year of diagnosis only, such as 2018 – the CSG requests more detailed data (“high-resolution data”), where available, on the anatomic site, behaviour and grade of each woman’s tumour; the clinical investigations, including stage at diagnosis and prognostic bio-markers; the date and type or purpose of the first course of treatment, the woman’s socio-economic status or educational level; and the woman’s last known vital status (alive, dead, emigrated), with the corresponding date. The team will also estimate the number of deaths within five years of diagnosis that would be avoidable if survival in England were as high as in a suitable comparator country or countries (“avoidable premature deaths”). In line with the UK General Data Protection Regulation (GDPR), this request is limited to the minimum amount of data necessary to achieve the purposes outlined within this Data Sharing Agreement (DSA). At the time of the initial request, the study team liaised closely with the NDRS analyst to ensure that the data fields being requested were adequate, relevant and limited to what is necessary. The ethical and legal aspects of VENUSCANCER sit within those from the parent CONCORD-4 study. The scientific difference is simply the higher level of detail – CONCORD-4 is a low-resolution study, while VENUSCANCER is defined as a “high-resolution” study. National data is required for this project to ensure that the analyses are representative of the entire population. Data covering 1990-2014 has been deemed necessary for this project to ensure that the study can appropriately capture the effects of changing practices and policies across the study period. VENUSCANCER is covered under the same Section 251 because it is a deeper analysis of CONCORD. VENUSCANCER does have support from The LSHTM Ethics Committee LSHTM is now requesting to continue to retain and process this data to support the completion of the remaining analyses and publications. The following is a summary of the aims of the research: It has been determined that there is no alternative, less intrusive ways of achieving the purposes set out within this DSA. The study has taken the appropriate steps to obtain a favourable opinion from an NHS Research Ethics Committee (REC). 1: To provide quantitative and directly comparable estimates of cancer survival in many countries worldwide, for the common malignancies in adults, and all malignancies in children, using individual data from population-based cancer registries. LSHTM is the sole data controller who processes the data for the purposes described within this Agreement. The CONCORD programme has both a Working Group and a Steering Group, these groups consist of scientists, representatives from national and international cancer registries, and members of the public. These groups serve in an advisory capacity only, and no individual or organisation represented in these groups plays a role in determining the purpose and means of the processing of the data covered under this Agreement. Further to this, LSHTM does not share data with individuals or organisations involved in these groups, or any other third parties. 2: To maintain systematic global surveillance of cancer survival, by documenting long-term trends and inequalities in cancer survival world-wide. LSTHM’s lawful basis for processing personal data under the UK GDPR is Article 6(1)(e): the processing is necessary for the performance of a task carried out in the public interest, and that task has a basis in law. The specific task takes the form of research and has been deemed to be in the public interest as it has the potential to benefit the provision of health and social care in England. The basis in law is the School’s Royal Charter, which empowers the School to perform certain functions in operating as a higher education institution. These functions include “promoting … research… and education in public health and tropical medicine and such other academic subjects as [the School] may consider appropriate”. 3: To enable examination of the underlying causes of survival differences. LSHTM’s lawful basis for processing special category data under the UK GDPR is GDPR Article 9(2)(j): the processing is necessary for scientific research purposes or statistical purposes, by Article 89(1) and with a basis in law. The basis in law is the School’s Royal Charter. 4: To derive measures such as the population “cure” fraction (the proportion of cancer patients who can be considered to be cured) and the number of avoidable premature deaths. The following NHS England Data will be accessed: • NDRS Cancer Registrations • NDRS Cancer Registrations (pre 1995) • NDRS Cancer Pathway • NDRS SACT and Molecular Somatic Gene The level of the Data will be Identifiable, necessary because the Cancer Survival Group has demonstrated in peer-reviewed research the importance of holding full dates of birth for survival analysis. Other researchers have reached the same conclusion. The CSG research included a sensitivity analysis of the entire national cancer registry data for England. It showed that ‘minimising’ the data used to estimate cancer survival by excluding the day of the date of birth introduces avoidable bias, and disables the purpose of the research by introducing avoidable bias. It shows that full dates are indeed adequate and relevant in relation to the purposes for which the researchers intend to process the data, and that they are necessary to avoid bias in meeting that purpose – which is to produce robustly comparable estimates of trends and international differences in cancer survival. This argument was explicitly accepted by the National Information Governance Board’s Ethics and Confidentiality Committee on 10 May 2011: “In reviewing this detailed application in depth, members had agreed that consent would not be feasible due to the large numbers of patients involved. Members also assessed the requested identifiers and agreed that these were reasonable in order to achieve the purposes. In particular, it was acknowledged that it would be necessary to access full dates of birth, diagnosis and death, as accurate survival calculations would require precise dates.” The Data will be minimised as follows • The data will be limited to a study cohort identified by the Cancer Survival Group in LSHTM • Data are limited to adult patients (15-99 years) diagnosed during these calendar periods with one of 22 cancers or groups of cancers and for children (0-14 years) diagnosed during the same calendar periods with any malignancy. • Limited to data between 1990 and 2021 or the latest year for which complete incidence data with follow-up are available. Data covering 1990-2021 or the latest available year are necessary to ensure that the study can capture long-term trends in cancer survival in England, the effects of changing practices and policies on those survival trends across the last three decades and to enable comparison of the impact of the COVID-19 pandemic on the distribution of stage at diagnosis, and short-term survival by stage, with the corresponding impact in other participating countries. • Limited to conditions relevant to the study identified by specific ICD-O-3 codes • Limited to the following geographic areas: all England. National data are required to ensure that the analyses are representative of the entire population. The Cancer Survival Group at LSHTM now seeks to obtain and process these data to support completion of the remaining analyses and publications from CONCORD-2 and CONCORD-3, and to produce the long-term trends in cancer survival in CONCORD-4 for patients diagnosed during the period 1990-2021 or later. It has been determined that there is no alternative and less intrusive approach to achieve the purposes set out within this DSA. LSHTM is the research sponsor and the sole controller/processor as the organisation responsible for ensuring that the Data will only be processed for the purpose described above. LSHTM’s lawful basis for processing personal data under the UK GDPR is Article 6(1)(e): the processing is necessary for the performance of a task carried out in the public interest, and that task has a basis in law. The specific task takes the form of research, and has been deemed to be in the public interest because it has the potential to benefit the provision of health care for cancer patients in England. The cancer survival estimates from the CONCORD programme do serve the public interest, in that they are relevant for comparative evaluation of the overall effectiveness of health services. Thus, they have been used to help formulate cancer control strategy by national and international bodies, including the World Health Organisation, the Organisation for Economic Co-operation and Development and the European Union. LSHTM’s lawful basis for processing special category data under GDPR also includes Article 9(2)(j), in that “the processing is necessary for … scientific or historical research purposes or statistical purposes in accordance with Article 89(1)”. The funding is provided by Cancer Research UK and other bodies, including Blood Cancer UK, the National Cancer Institute (France) and the European Research Council. The funding is specifically for the project described. Funding is in place until 2027. The funders will not have the ability to suppress or otherwise limit the outputs of the research. The CONCORD Steering Committee includes scientists, representatives from national and international cancer registries, and members of the public, including five publicly known cancer survivors who advise the study on the deployment and publication of the results. The Steering Committee serves in an advisory capacity only, and no individual or organisation represented on the Steering Committee plays a role in determining the purpose and means of the processing of the data covered under this Agreement. The Cancer Survival Group takes demonstrable action to engage with members of the public. Cancer survivors have been members of the CONCORD Steering Committee since the study began in 2000. In 2017, Cancer Research UK awarded the Cancer Survival Group special recognition “for their sector-leading working involving people affected by cancer in the design and delivery of cancer research”. The study has support under section 251 of the NHS Act 2006 to enable the common law duty of confidentiality to be temporarily lifted so that confidential patient information can be processed without consent. 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

Processing activities

There was will be no flow of patient identifiers into Public Health NHS England (PHE) to support this request. Under ODR1516_330 (which has now been superseded by this Agreement) PHE provided NHS England will provide the Cancer Survival Group at LSHTM with identifiable Cancer Registration for all individuals who met meet the studies study inclusion criteria (except where either the national data opt-out or the NDRS opt-out is at play). criteria. Following the receipt of the data by LSHTM, there have been no further flows of data. LSHTM does not share any personal data with other bodies. This Data Sharing Agreement expressly prohibits such transfers. LSHTM does not use external agencies to do any data processing on their behalf. NHS England will provide the relevant records from the NDRS Cancer Registrations, NDRS SACT, NDRS Somatic and NDRS Cancer Pathway to the Cancer Survival Group at the LSHTM. The Data do not contain the name, address or NHS number of any person, but do contain NHS England’s unique ID for individuals in the cancer registry database. The disseminated data will include the dates of birth, diagnosis and last known vital status. Once in receipt of the data LSHTM analysed the data to obtain the following: The data will be stored on secure servers managed solely by the Cancer Survival Group at LSHTM. The CSG operates comprehensive physical, managerial and electronic procedures to reduce the risk of data loss to the absolute minimum. Computers used for processing and storage are in a digitally locked room to which only authorised Cancer Survival Group personnel have access. The computers are not connected to the internet or the LSHTM intranet by cable, wireless or any other means. Remote access to the data is not allowed: CSG staff must be physically present in LSHTM’s Secure Annex to access the data. The Data will be accessed on site at the premises of LSHTM only. • An estimation of survival by age and sex The processing necessary for the above-listed analyses will be carried out by substantive members of staff of the Cancer Survival Group at LSHTM who have authorisation from the Principal Investigator, and all of whom have undergone appropriate training and have signed a binding declaration to maintain the security and confidentiality of the data. The data are not and will not be shared with any third party. • Standardisations for age with the appropriate set of weights for each cancer from the International Cancer Survival Standard (ICSS) weights Once in receipt of the Data, the CSG will produce the primary analyses: • Obtain statistics to compare survival and the excess hazard of death between populations over time, while adjusting for age, sex and race • Estimates of net survival up to 10 years after diagnosis, by age, sex, calendar period and type of cancer In addition, LSHTM will carry out the following secondary analyses based on the survival estimates: • Standardisation for age with the appropriate set of weights for each cancer from the International Cancer Survival Standard (ICSS) weights • Modelling of the population cure fraction • Statistics to compare survival and the excess hazard of death between populations over time, while adjusting for age, sex and race, and background mortality. • Estimation of prevalence Followed by secondary analyses: • Estimation of the number of avoidable premature deaths • to model trends in the population "cure" fraction for selected cancers The data disseminated under this Agreement will not be linked to other datasets to achieve the analyses stated above. • to estimate trends in prevalence The processing necessary for the above-listed analyses will be carried out by members of the Cancer Survival Group, all of whom have undergone appropriate training and have signed a binding declaration to maintain the security and confidentiality of the data. All members of the Cancer Survival Group are substantive employees of LSHTM. • to estimate the number of avoidable premature deaths, as defined above. LSHTM operate comprehensive physical, managerial and electronic procedures to reduce the risk of data loss to the absolute minimum. Computers used for processing and storage are in a digitally locked room to which only Cancer Survival Group personnel have access. The computers are not connected to the internet by cable, wireless or any other means. More than 50 other countries are already involved in CONCORD-4 (including the other 3 UK nations). The Data will not leave England at any time. The Data will not be linked with any other data nor shared outside LSHTM. There will be no requirement and no attempt to re-identify individuals when using the Data.

Expected output

The study already has, and aims to continue to publish its findings in reputable peer-reviewed journals. An extensive list of publications can be found on the studies' web pages: https://researchonline.lshtm.ac.uk/view/research_centre/XCSG/. Any data contained within any publications will be aggregated with small numbers suppressed in line with the appropriate suppression rules. Outputs expected as part of this programme of work include: The study regularly updates its web pages to ensure that the scientific community and the public are kept up to date with the study's findings (https://csg.lshtm.ac.uk/research/themes/concord-programme/). LSHTM also publish a blog entitled “Surviving cancer: how big data is helping patients live longer, healthier lives.” (https://www.lshtm.ac.uk/research/research-action/features/surviving-cancer-how-big-data-helping-patients-live-longer), which highlights some of the key findings and the benefits of the CONCORD project. • Submissions to peer-reviewed journals: two summary articles from CONCORD-4 on world-wide survival trends for children and for adults, and one summary article for VENUSCANCER, to be published during 2024-2025. More detailed analyses will follow over the next few years. As with previous CONCORD cycles, it is expected to publish cancer-specific articles during the period 2024-2027. This is a massive programme, in which the CSG has already received more than 50 million individual cancer patient registrations from several hundred cancer registries. More detailed analyses will be pursued and published in the ensuing three years. An extensive list of publications related to CONCORD-2 and CONCORD-3 can be found on the CSG web page. The study regularly posts lay-person accessible updates on social media to encourage engagement from the public. The social media impact score of 1,416 for CONCORD-3 is in the top 0.02% of 19 million scientific articles evaluated to date. CONCORD-3 was one of the 10 most widely cited articles published during 2018-2019 in The Lancet, a leading medical journal. • Reports of findings for each world region to the Organisation for Economic Co-operation and Development (OECD). The CSG has recently extended its formal partnership with OECD (from 2017) up to 2027. The results will be included in OECD’s regular Health at a Glance publications for up to 50 countries. The programme takes demonstrable action to ensure that they engage with members of the public, cancer patients have been members of the CONCORD Steering Committee since the study began in 2000. In 2017, Cancer Research UK awarded the Cancer Survival Group special recognition “for [our] sector-leading working involving people affected by cancer in the design and delivery of cancer research”. • Presentations and posters at major national and international conferences, e.g., the International Association of Cancer Registries, the North American Association of Central Cancer Registries, the European Society of Medical Oncology, the European Network of Cancer Registries and the African Organisation for Research and Training in Cancer. • Publication of lay summaries of the key findings to ensure that the scientific community and the public are kept up to date with findings. LSHTM has published a blog entitled “Surviving cancer: how big data is helping patients live longer, healthier lives,” which highlights some of the key findings and the benefits of the CONCORD programme. • Dynamic, user-defined access to the results from CONCORD and VENUSCANCER via the Cancer Survival Group web-site, by 2024-25. • On-line publication of a Frequently Asked Questions document, updating the one produced for CONCORD-3. • Findings of this research have also been cited in cancer control policy documents in many other countries, and in the European Union’s Country Health Profiles since 2019. In February 2024, OECD and the EU published “Beating Cancer Inequalities in the EU”, in which CONCORD-3 results feature strongly in the cancer chapter. The Cancer Survival Group contributed extensively to the drafting.9 • The outputs will not contain individual NHS England Data. They will contain aggregated results on the numbers of patients contributing to each survival analysis (small numbers will be suppressed in line with relevant disclosure rules for the dataset(s) from which the information was derived) and the net survival estimates with their 95% confidence intervals. The outputs will be communicated to relevant recipients through the following dissemination channels: • Peer-reviewed scientific articles. • Workshops involving Working Group members at international cancer conferences. • Webinars open to the public, such as London Global Cancer Week, where we have presented CONCORD and VENUSCANCER progress for several years. • Social media. • Posters displayed at international conferences. • Press/media engagement. Previous CONCORD cycles have generated intense media interest, with more than 900 worldwide outputs for CONCORD-3. The Altmetric score of social media impact for the CONCORD-3 summary article (1,413) is higher than 99.9% of 24 million articles evaluated to date. The CONCORD-3 summary article has been cited over 4,000 times, and was one of the 10 most widely cited articles published during 2018-2019 in The Lancet, a leading medical journal. • CSG expects to circulate draft articles among the 600 members of the CONCORD and VENUSCANCER Working Groups during 2024 and to submit them to peer-reviewed journals during 2024-2025. • Soon after the peer-reviewed publications, CSG will produce a lay summary of the findings, to be published either online or as an editorial in a suitable scientific journal, or in one of the mass media (e.g., Daily Mail, Guardian, etc.). This would help to reduce misinterpretation of the findings, which recent media publications show are still widespread.

Expected measurable benefits

Information on the survival of all cancer patients in a population has the potential to enable comparison enables international comparisons of the effectiveness of health systems. Long-term surveillance of survival trends will contribute to the evidence base for global policy on cancer control. control by the end of 2027. CONCORD The results from CONCORD-4 will monitor progress towards thus be expected to improve the overarching goal of “major reductions in premature deaths from cancer, and improvements in quality of life and cancer survival”. This could significantly improve prospects for global cancer control in England and therefore the UK more broadly, by documenting any inequalities in cancer survival between the four UK nations and between England and other countries. CONCORD-4 thus has the obvious potential to benefit the provision of health and social care in England. This programme of work CONCORD-4 has the potential to impact both national and international and national policy, policy for cancer control, and to provide benefits to cancer patients diagnosed and treated in health services in England, the UK and around the world and their patients. world. The CONCORD programme will continually monitor the impact of these findings. The findings of this research will contribute to evidence-based decision-making for policy-makers. Results from previous cycles have contributed to cancer control plans in England since 2008, and they have been cited in cancer control policy documents in many other countries, and in the European Union’s Country Health Profiles since 2019. In February 2024, OECD and the EU published “Beating Cancer Inequalities in the EU”, in which CONCORD-3 results feature strongly in the cancer chapter. The Cancer Survival Group (CSG) contributed extensively to the drafting (reference 1 below). Results from CONCORD-4 will also contribute to evaluation of progress towards the central target in the WHO’s Global Initiative for Childhood Cancer, which is to raise five-year survival from all cancers in children from 30% to 60% by 2030 (reference 2 below). The CSG will be presenting progress on this aspect of CONCORD-4 at WHO Geneva on 29 May 2024. In the CONCORD-4 component study VENUSCANCER, the CSG aims to determine the extent to which inequalities in survival from the three most common cancers in women in the UK and other countries may be attributable to differences between populations in the biology of these cancers, or to differences in patterns of care (e.g. stage at diagnosis, access to treatment, compliance with treatment guidelines), or to the socio-economic status of the women, or to broader aspects of society, such as national wealth, expenditure on health (% of GDP), or the status of universal health coverage. Trends and inequalities in cancer survival – whether regional, socio-economic, or by gender or race/ethnicity – contribute to understanding those inequalities, and they stimulate policy-makers to address them, both at national and international level. The policy changes may relate to investment, reorganisation of services, introduction of new methods of diagnosis or treatment, or public awareness of the importance of early diagnosis. Cancer plans in England have been underpinned by survival estimates from the Cancer Survival Group since 2000. In Denmark, survival trends that were lagging behind other Nordic countries led to changes in the organisation of primary care to speed up access to diagnosis and treatment for people with suspected cancer. The social media impact (Altmetric) score of the summary publication in 2018 from CONCORD-3 (reference 3 below), shows the extent to which publication of the findings excites considerable interest in the lay public, and not just in scientific circles. That score is higher than for 99.9% of more than 24 million articles evaluated to date. The CSG also expects a major public impact from publication in early 2025 of a summary of the long-term history of the CONCORD programme and the extent to which the results have contributed to improving cancer control policy over the last 20 years. This is being prepared in collaboration with the Editor-in-Chief of The Lancet, one of the world’s most high-profile medical journals.

Benefits reported

The findings of CONCORD, previous cycles of the CONCORD programme, and their implications, have been incorporated into national and international policy and guidance, the implementation of these guidance. Implementation has in turn impacted the provision of health and social care for cancer patients around the world, including in England. CONCORD results have been used by the Organisation for Economic Co-operation and Development in its global, continental and online publications ‘Health at a Glance’ since 2017; by the World Health Organisation to evaluate the pricing of medicines for cancer prevention and treatment in 2018, and in a Lancet Oncology Commission on the benefits of delivering sustainable care for children with cancer in 2020. CONCORD results have been used: CONCORD results have also been used in the European Union’s new Country Health Profiles as part of the State of Health in the EU initiative, by the World Health Organisation to examine the impact of the pricing of medicines for cancer prevention and treatment, and in a Lancet Oncology Commission on the long-term economic benefit of delivering sustainable care for children with cancer around the world. • By the Organisation for Economic Co-operation and Development (OECD) in all its global, continental and online publications ‘Health at a Glance’ since 2017 – one of more than 20 such publications is cited below (reference 4); • By the World Health Organisation, to evaluate the pricing of medicines for cancer prevention and treatment in 2018 (reference 5 below); • In a Lancet Oncology Commission on the long-term economic benefits of delivering sustainable care for children with cancer around the world in 2020 (reference 6 below); • In the European Union’s new Country Health Profiles as part of the State of Health in the EU initiative – again, one of more than 30 such publications is cited below (reference 7). These publications are produced by official bodies such as OECD, WHO and the European Union precisely in order to drive health policy to improve the outcomes for all cancer patients. In each case, The Cancer Survival Group above have cited one of the many publications involved. Without the evidence provided by the CONCORD programme to more than 50 governments in the UK, the European Union and in other continents would have no insight on the comparative effectiveness of their health systems in managing cancer patients for the best possible outcome. The “specific yielded benefit” for cancer patients is exactly that – that governments commit to improving their care. The Cancer Survival Group has already been asked by OECD and the European Union to prepare survival indicators from CONCORD-4 for the next cycle of the EU Country Health Profiles, in early 2025. References cited in evidence for statements made in Section 5. 1. OECD. Beating cancer inequalities in the EU: spotlight on cancer prevention and early detection. Paris, 2024. https://doi.org/10.1787/14fdc89a-en. 2. World Health Organisation. WHO Global Initiative for Childhood Cancer: an overview. Geneva: WHO, 2018. https://www.who.int/publications/m/item/global-initiative-for-childhood-cancer. 3. Allemani C, Matsuda T, Di Carlo V et al. Global surveillance of trends in cancer survival 2000–14 (CONCORD-3): analysis of individual records for 37,513,025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries. Lancet 2018; 391: 1023-75. https://doi.org/10.1016/S0140-6736(17)33326-3. 4. OECD/European Union. Health at a Glance: Europe 2022. State of Health in the EU Cycle. Paris: OECD Publishing; 2022. 5. World Health Organisation. Pricing of cancer medicines and its impacts: a comprehensive technical report for the World Health Assembly Resolution 70.12 Operative paragraph 2.9 on pricing approaches and their impacts on availability and affordability of medicines for the prevention and treatment of cancer. Geneva: WHO, 2018. https://apps.who.int/iris/handle/10665/277190. 6. Atun R, Bhakta N, Denburg A et al. Sustainable care for children with cancer: a Lancet Oncology Commission. Lancet Oncol 2020; 21: 185-224. https://doi.org/10.1016/S1470-2045(20)30022-X. 7. OECD/European Observatory on Health Systems and Policies. State of Health in the EU: United Kingdom Country Health Profile 2019. Paris: OECD Publishing, 2019. ISBN 9789264578661.