Periodic Reporting for period 2 - VENUSCANCER (Women’s cancers: do variations in patterns of care explain the world-wide inequalities in survival and avoidable premature deaths?)
Période du rapport: 2019-11-01 au 2021-04-30
VENUSCANCER is a world-wide study designed to explain the global inequalities in survival from breast, cervical and ovarian cancers, the three most common cancers in women. The goal is to provide levers for health policy to reduce or eliminate avoidable differences in survival from these cancers.
Opening the World Cancer Congress in Paris (2016), the French President, François Hollande, insisted that women should be at the heart of cancer control, “because they are victims of inequality in access to prevention, treatment and screening in every country in the world.”
Cancers of the breast, ovary and cervix are a major public health problem world-wide. Every year, approximately 2.5 million women are diagnosed with one of these cancers, and they account for over 900,000 deaths. Many of these deaths are avoidable, even in low- and middle-income countries, where cancers in women represent a major economic burden to families that lose a mother, but also to the national economy.
Reducing the numbers of cancer deaths in women will require improvements in prevention, but also more effective health systems, to improve the survival of women who do develop one of these cancers. Yet access to safe surgery varies widely between the richest and poorest countries, and in more than 30 of the poorest countries, radiotherapy services are not available at all.
Differences in survival from these three cancers between high- and low-income countries are striking. Inequalities in survival also exist between high-income countries, and even between regions within those countries. The problem has been succinctly summarised: “political toleration of unfairness in access to affordable cancer treatment is unacceptable”.
In 2015, the CONCORD programme established world-wide surveillance of trends in 5-year survival over the period 1995-2009. It documented for the first time the very wide global differences in survival trends for most of the common cancers. In 2018, the third cycle of the CONCORD programme updated world-wide trends in survival for patients diagnosed up to 2014.
VENUSCANCER, embedded in the CONCORD programme, will examine in much greater depth why these enormous differences in survival up to five years after diagnosis still persist for women diagnosed in the most recent years for which data are available (2012-2017). It will enable us to see how much of the differences in survival between high- and low-income countries can be explained by differences in biological characteristics of the cancers, or the health care women receive, or their socio-economic status.
The overall aim of VENUSCANCER is to provide actionable evidence for health policies to reduce the burden of women’s cancers world-wide. The key questions are:
• Why in the 21st century does survival from women’s cancers depend so much on where they live?
• How can population-based data be used to improve our understanding of the effectiveness of health systems in dealing with cancer?
• To what extent do stage at diagnosis and access to the main types of treatment explain inequalities in survival from women’s cancers?
• How many premature deaths that are attributable to inequalities in 5-year survival between and within countries can be avoided?
Opening the World Cancer Congress in Paris (2016), the French President, François Hollande, insisted that women should be at the heart of cancer control, “because they are victims of inequality in access to prevention, treatment and screening in every country in the world.”
Cancers of the breast, ovary and cervix are a major public health problem world-wide. Every year, approximately 2.5 million women are diagnosed with one of these cancers, and they account for over 900,000 deaths. Many of these deaths are avoidable, even in low- and middle-income countries, where cancers in women represent a major economic burden to families that lose a mother, but also to the national economy.
Reducing the numbers of cancer deaths in women will require improvements in prevention, but also more effective health systems, to improve the survival of women who do develop one of these cancers. Yet access to safe surgery varies widely between the richest and poorest countries, and in more than 30 of the poorest countries, radiotherapy services are not available at all.
Differences in survival from these three cancers between high- and low-income countries are striking. Inequalities in survival also exist between high-income countries, and even between regions within those countries. The problem has been succinctly summarised: “political toleration of unfairness in access to affordable cancer treatment is unacceptable”.
In 2015, the CONCORD programme established world-wide surveillance of trends in 5-year survival over the period 1995-2009. It documented for the first time the very wide global differences in survival trends for most of the common cancers. In 2018, the third cycle of the CONCORD programme updated world-wide trends in survival for patients diagnosed up to 2014.
VENUSCANCER, embedded in the CONCORD programme, will examine in much greater depth why these enormous differences in survival up to five years after diagnosis still persist for women diagnosed in the most recent years for which data are available (2012-2017). It will enable us to see how much of the differences in survival between high- and low-income countries can be explained by differences in biological characteristics of the cancers, or the health care women receive, or their socio-economic status.
The overall aim of VENUSCANCER is to provide actionable evidence for health policies to reduce the burden of women’s cancers world-wide. The key questions are:
• Why in the 21st century does survival from women’s cancers depend so much on where they live?
• How can population-based data be used to improve our understanding of the effectiveness of health systems in dealing with cancer?
• To what extent do stage at diagnosis and access to the main types of treatment explain inequalities in survival from women’s cancers?
• How many premature deaths that are attributable to inequalities in 5-year survival between and within countries can be avoided?
Since the project began in May 2018, we have spent considerable time developing the protocol for data collection, in collaboration with over 300 cancer registries world-wide. This is a major undertaking.
We have organised three VENUSCANCER Working Group meetings to discuss the protocol, held during major international conferences. We focused on the first aim of the project, to collect detailed demographic, biological and clinical data for women diagnosed with breast, ovarian or cervical cancer in the most recent year for which data are available, and in as many countries as possible.
In February 2019, we invited over 300 cancer registries to complete online questionnaires to identify which registries have data at the required level of completeness, or are willing to improve their data. We presented analyses of the questionnaires in Lisbon, Portugal (May 2019), in Vancouver, Canada (June 2019) and in Moscow, Russia (September 2019). By September 2019, 123 cancer registries in 42 countries (4 lower-middle-income, 14 upper-middle-income, 24 high-income) had submitted at least one questionnaire, but most registries (80%) submitted all three. We will include cancer registries with the highest availability and completeness of the required data.
The data collection protocol has now been finalised. It enables cancer registries to start their own database, but following rigorous rules.
Despite the difficulties posed by the COVID-19 pandemic and by Brexit, we have finalised the legal contracts to permit the transfer of funds for data collection to selected cancer registries in low- and middle-income countries and data-sharing agreements with cancer registries in the 27 EU Member States to enable transmission of sensitive personal data in compliance with the EU General Data Protection Regulation.
We have organised three VENUSCANCER Working Group meetings to discuss the protocol, held during major international conferences. We focused on the first aim of the project, to collect detailed demographic, biological and clinical data for women diagnosed with breast, ovarian or cervical cancer in the most recent year for which data are available, and in as many countries as possible.
In February 2019, we invited over 300 cancer registries to complete online questionnaires to identify which registries have data at the required level of completeness, or are willing to improve their data. We presented analyses of the questionnaires in Lisbon, Portugal (May 2019), in Vancouver, Canada (June 2019) and in Moscow, Russia (September 2019). By September 2019, 123 cancer registries in 42 countries (4 lower-middle-income, 14 upper-middle-income, 24 high-income) had submitted at least one questionnaire, but most registries (80%) submitted all three. We will include cancer registries with the highest availability and completeness of the required data.
The data collection protocol has now been finalised. It enables cancer registries to start their own database, but following rigorous rules.
Despite the difficulties posed by the COVID-19 pandemic and by Brexit, we have finalised the legal contracts to permit the transfer of funds for data collection to selected cancer registries in low- and middle-income countries and data-sharing agreements with cancer registries in the 27 EU Member States to enable transmission of sensitive personal data in compliance with the EU General Data Protection Regulation.
Health policy-makers need good evidence on the reasons for international disparities in cancer survival, in order to focus their policy initiatives.
Such evidence can come from “high-resolution” studies, which aim to identify the key drivers of inequalities in cancer survival. Detailed clinical data on the stage at diagnosis, investigations and treatment are obtained from medical records and anonymised by the cancer registry. Analysis of these data can show the extent to which international differences in survival are due to factors such as late stage at diagnosis or under-treatment in the elderly.
VENUSCANCER will be an extremely important high-resolution study, because it is both population-based and in over 40 countries world-wide. We will study the biological characteristics of tumours in all women diagnosed with cancer of the breast, ovary or cervix in each country, and the patterns of care and survival. We will highlight the strengths and weaknesses of each country’s health system in providing care for all women diagnosed with one of these three cancers.
Trends in the number of avoidable deaths within five years of diagnosis offer a powerful contrast with better-performing health systems in neighbouring countries. They stimulate policy-makers to plan more appropriate cancer control strategies.
Safe and effective surgery is still not available in many countries, and in some countries, radiotherapy is not available at all. Recent trends in cancer survival, and in the number of avoidable premature deaths, will provide key evidence for planning strategies to guarantee equal access to cancer prevention, screening and treatment for women in every country in the world.
VENUSCANCER will help drive policy to reduce inequalities in survival from the most common cancers in women. We will provide targeted dissemination of the findings to scientists, policy-makers, cancer patients and the general public.
Such evidence can come from “high-resolution” studies, which aim to identify the key drivers of inequalities in cancer survival. Detailed clinical data on the stage at diagnosis, investigations and treatment are obtained from medical records and anonymised by the cancer registry. Analysis of these data can show the extent to which international differences in survival are due to factors such as late stage at diagnosis or under-treatment in the elderly.
VENUSCANCER will be an extremely important high-resolution study, because it is both population-based and in over 40 countries world-wide. We will study the biological characteristics of tumours in all women diagnosed with cancer of the breast, ovary or cervix in each country, and the patterns of care and survival. We will highlight the strengths and weaknesses of each country’s health system in providing care for all women diagnosed with one of these three cancers.
Trends in the number of avoidable deaths within five years of diagnosis offer a powerful contrast with better-performing health systems in neighbouring countries. They stimulate policy-makers to plan more appropriate cancer control strategies.
Safe and effective surgery is still not available in many countries, and in some countries, radiotherapy is not available at all. Recent trends in cancer survival, and in the number of avoidable premature deaths, will provide key evidence for planning strategies to guarantee equal access to cancer prevention, screening and treatment for women in every country in the world.
VENUSCANCER will help drive policy to reduce inequalities in survival from the most common cancers in women. We will provide targeted dissemination of the findings to scientists, policy-makers, cancer patients and the general public.