Policy Paper on Tackling Social Inequalities in - Cancon

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Policy Paper on Tackling Social Inequalities in - Cancon

Transcript Of Policy Paper on Tackling Social Inequalities in - Cancon

Policy Paper on Tackling Social Inequalities in Cancer Prevention and Control for the European Population
R. Peiró Pérez, A. Molina Barceló, F. De Lorenzo, T. Spadea, S. Missinne, F. Florindi, N. Zengarini, K. Apostolidis, M. P Coleman, C. Allemani, M. Lawler

Cancer Control Joint Action – Policy Papers
CONTENTS
1  Recommendations at a glance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 2  Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 3 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 4 Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 5 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 6 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
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Tackling Social Inequalities in Cancer Prevention and Control
1  Recommendations at a glance
Capacity-building for cancer prevention and control
Recommendation 1: Embed equity within the cancer prevention and control policies in all European Union Member States.
Specific Recommendation (S.R.) 1.1: Formulate specific objectives that aim to tackle social inequalities in cancer across the whole population with additional emphasis on socially vulnerable groups. S.R. 1.2: Include indicators of social inequality within the quality criteria established for cancer prevention and control programmes.
Recommendation 2: Align cancer prevention and control policies with a Health in all Policies approach. S.R. 2.1: Create a multi-sectoral working group that includes experts on social inequalities in health to embed a Health in all Policies approach within cancer policies. S.R. 2.2: Assess the impact of current and new policies, programmes, and health services on social inequalities in cancer. S.R. 2.3: Produce a report on social inequalities in cancer, and make it available to the public.
Recommendation 3: Adopt a Health Equity Impact Assessment framework. S.R. 3.1: Assess the evidence on social inequalities in cancer and identify any gaps in knowledge. S.R. 3.2: Introduce a unique national identifier to facilitate safe record linkage between different databases in each European country in order to monitor social inequalities in cancer. S.R. 3.3: Collect information on patient reported outcome measures (PROM), and link this information with cancer registry data. S.R. 3.4: Use the Health Equity Impact Assessment tool to assess systematically the impact of policies on social inequalities in cancer.
Recommendation 4: Engage and empower communities and patients in cancer prevention and control activities. S.R. 4.1: Involve communities and patient associations in decision making processes. S.R. 4.2: Ensure that socially vulnerable groups are involved in the design, implementation and evaluation of health policies related to cancer prevention and control. S.R. 4.3: Ensure that all patients receive up-to-date and accurate information and are proactively involved in their care.
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Cancer Control Joint Action – Policy Papers
Recommendation 5: Promote the exchange of good practice and support development of professional expertise in social inequalities in cancer in all European Union Member States. S.R. 5.1: Foster exchanges of professional experience in all European Union Member States in tackling social inequalities in cancer. S.R. 5.2: Provide appropriate training for cancer prevention, care, and rehabilitation professionals to tackle social inequalities in cancer.
Recommendation 6: Support the development of European research programmes that help deliver equity in cancer prevention and control in all European Union Member States.
Primary and secondary cancer prevention policies
Recommendation 7: Implement proportionate universalism policies to develop and maintain living environments favouring compliance with the European Code Against Cancer. S.R. 7.1: Ensure that tobacco and alcohol control policies, as well as other interventions promoting healthy behaviours, are addressed to the whole population, with additional emphasis among socially vulnerable groups.
Recommendation 8: Improve equitable access and compliance with cancer screening programmes. S.R. 8.1: Provide screening processes that address the whole population with additional emphasis among socially vulnerable groups. S.R. 8.2: Ensure the development and implementation of guidelines for quality assurance in cancer screening, which must include equity as a quality criterion.
Cancer treatment, survivorship and rehabilitation policies
Recommendation 9: Ensure equitable access to timely, high-quality and multi-disciplinary cancer care. S.R. 9.1: Implement an integrated model of cancer care management, whereby primary and secondary care are seamlessly linked. S.R. 9.2: Implement measures to ensure access to and use of appropriate treatments that are addressed to the whole population with additional emphasis on socially vulnerable groups S.R. 9.3: Ensure the development and implementation of guidelines in all involved disciplines, which must include equity as a quality criterion.
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Tackling Social Inequalities in Cancer Prevention and Control
Recommendation 10: Ensure equitable access to high-quality surgical care in all European Union Member States. S.R. 10.1: Establish optimal benchmarking standards for surgical oncology in all European Union Member States to help reduce the current inequalities experienced by cancer patients. S.R. 10.2: Promote the creation of national information sources on the volume of surgeries per cancer centre, to provide patients with accurate activity data to aid in their choice of surgical centre.
Recommendation 11: Ensure availability of sufficient radiotherapy capacity with appropriate technology innovation in all European Union Member States.
Recommendation 12: Ensure that all patients have timely access to appropriate systemic therapy. S.R. 12.1: Promote access to innovative therapies that deliver value-based, effective care, by harmonising Health Technology Assessment in all Member States.
Recommendation 13: Develop national cancer rehabilitation and survivorship policies, underpinned by an equity perspective. S.R. 13.1: Make survivorship and rehabilitation an integral component of the patient care pathway from the time of diagnosis. S.R. 13.2: Raise awareness about late effects, with the aim of providing recommendations to all patients and tailoring information specifically for socially vulnerable groups. S.R. 13.3: Integrate employment programmes into follow-up survivorship care, with additional emphasis among socially vulnerable groups, to support return to work after acute treatment. S.R. 13.4: Develop financial incentives to help employers introduce adaptations to work environments/situations in order to accommodate survivors’ return to work.
2  Executive Summary
Europe is characterised by unacceptable disparities in access to cancer care and by significant social inequalities between and within European countries, which deeply impact cancer incidence, survival and mortality. Wide social inequalities in cancer incidence and survival exist both between and within European countries. All European Union Member States are affected by inequalities in cancer care between various population groups. Survival is often much lower in Southern and Eastern European countries than the European average. Important geographic differences in survival also exist within Western and Northern European countries, indicating that access to quality cancer care is not uniform across all European regions and that more privileged groups have better outcomes, due to a combination of lower exposure to risk factors, better access to screening programmes, better access to health services, and better capacity to absorb the social and financial consequences of cancer. Disadvantaged groups in all EU countries are at higher risk for most of the common cancers.
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Cancer Control Joint Action – Policy Papers
Social inequalities in cancer outcomes also have significant financial consequences for individuals and their families, and major economic consequences for Member States and the European Union. These costs account for 15% of social welfare system costs and 20% of the overall cost of health systems in the EU. Social inequalities in cancer are thus not only unethical, but also have significant consequences for the financial sustainability of healthcare budgets in all EU Member States. Since social inequalities in cancer have common roots, both across the continent of Europe and between social groups within the European population, they should be addressed at the European level. The European Union can play a crucial role in addressing inequalities in cancer care, by planning joint actions in all EU countries and by implementing effective measures to minimise inequalities in cancer incidence and survival.
This policy paper is one of the deliverables of the Joint Action on Cancer Control (CanCon), an initiative of the European Commission with partners from 17 European countries. It provides practical recommendations on which the European Commission and Member States can base concrete actions designed to reduce social inequalities in cancer. These recommendations reflect the analysis of contributing experts regarding the challenges facing EU Member States. They reflect the shared learning that can be achieved from the approaches that individual Member States have already taken to address some of these challenges. The recommendations are also informed by a survey completed by Member States. The policy paper includes 13 general recommendations, grouped into 3 main focus areas: capacity-building; primary and secondary prevention; and cancer treatment, survivorship and rehabilitation.
The first area of focus of the recommendations describes actions that the EU can take to support capacity-building for cancer control and prevention. There is a need to strengthen cancer prevention and control policies across the EU, by developing valid indicators of equity and then formulating objectives that are specifically designed to improve equity in cancer outcomes. EU countries can also build upon the Health in all Policies approach, and adopt a Health Equity Impact Assessment framework to promote the assessment of the impact of current and new policies, programmes and health services on social inequalities in cancer. This process requires the engagement and empowerment of patients and communities, to ensure that socially vulnerable groups are fully involved. Capacity-building can also be supported by promoting professional expertise and the exchange of good practices to tackle cancer inequalities at the EU level. European research programmes that can help deliver equity in cancer prevention and control should also be developed.
The second area of focus aims at promoting equity in primary and secondary prevention policies. The implementation of proportionate universalism policies to develop and maintain living environments that facilitate compliance with the European Code Against Cancer is recommended. Furthermore, actions must be implemented to improve equity in access to and compliance with cancer screening programmes. These actions and policies must be addressed to the whole population, but with additional emphasis on socially vulnerable groups.
The third area of focus relates to the promotion of equity in access to cancer care and to survivorship and rehabilitation services. Equity in access to timely, high-quality and multi-disciplinary cancer care is essential. This requires an integrated model of cancer care management, and inclusion of equity as a quality criterion in cancer care guidelines. Equity in access to high-quality surgical care is also recommended, with particular efforts to be made in establishing benchmark standards for surgical oncology and providing information to patients on the volume of surgeries performed at each cancer centre.
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Tackling Social Inequalities in Cancer Prevention and Control
Investments in radiotherapy equipment and training are also necessary to ensure sufficient radiotherapy capacity across the EU. Unacceptable inequalities exist in access to systemic therapy (including essential chemotherapies and innovative personalised medicines), which can be targeted by harmonising Health Technology Assessment procedures across Member States. Finally, Member States should adopt and implement national cancer survivorship plans. These plans should become an integral component of each patient’s care pathway. They should also include programmes designed to enhance return to full employment and financial incentives to ensure reintegration of cancer survivors into active life.
Concepts and glossary of terms used in this document
Social inequalities in health: refer to differences in health that are systematic, socially produced, unnecessary and avoidable and are considered unfair and unjust (1). The European Commission recommends using the term social inequalities in health instead of social inequities in health, because it is more readily understood by the general public, and the term health inequities does not have a direct translation in all languages (2). These inequalities exist both between countries and/or regions and among social groups (3).
Equity in health: implies that each person should attain his/her full health potential and that no one should be disadvantaged from achieving this because of their social position or other socially determined circumstances. This refers to every citizen and not just to a particularly disadvantaged population segment (1).
Place of residence (including municipalities, regions and countries): The habitual place of residence of each cancer patient at the time of diagnosis is the geographic basis of cancer registration from which all metrics of cancer incidence, prevalence and survival are derived. It is also a stratifying factor for socially determined circumstances. The role of the place of residence in determining health goes beyond socioeconomic status. Many of the differences in health outcomes related to place of residence are avoidable if the necessary infrastructure is in place. When the difference is related to distribution of services such that services are not available to populations living within certain areas, this can be considered unfair (4). Other socially stratifying factors that are determinants of health include: race/ethnicity, culture, language, occupation, sex and gender, religion, education, socioeconomic status, and social capital (4)..
Social gradient in health: the social gradient runs from the top to the bottom of the socioeconomic spectrum. The social gradient in health means that health inequalities affect everyone (3).
Socially vulnerable groups: refer to subgroups of the population that- because of their position in the social structure- are at higher risk of multiple exposures to cancer risk factors, both clustered cross-sectionally and accumulated longitudinally throughout the life course (5) (e.g. people with mental, physical, and/or psychosocial disabilities, illiterate persons, refugees, prisoners etc.)
Social inequalities in cancer: refer to health inequalities that span the full cancer continuum and involve social inequalities in the prevention, incidence, prevalence, detection and treatment, survival, mortality, and burden of cancer and other cancer-related health conditions and behaviours (6).
Proportionate universalism approach: based on universal action but with a scale and intensity that are proportionate to the level of disadvantage (7).
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3  Introduction
There is an urgent need for policies that support improved cancer prevention and control to be at the top of the European public health agenda. In 2012 approximately 3,450,000 European citizens were diagnosed with cancer, with over 1,750,000 dying from cancer (8). In 17 out of 28 EU countries, cancer has now overtaken cardiovascular disease as the leading cause of premature death (9). Cancer also places a significant social and economic burden on European citizens and societies.
In addition to these statistics, there are unacceptable social inequalities that exist across Europe in terms of cancer prevention, care, survival, and rehabilitation. There are also social inequalitiesincluding geographical inequalities- related to cancer incidence, survival and mortality both between and within European countries (10-13). The situation is particularly challenging in Eastern Europe, with survival for many cancers below the European average (11). Western and Northern European countries also show inequalities in cancer care. This is reflected in lower survival from lung, colorectal and ovarian cancers in the UK and Denmark when compared to Norway and Sweden (14).
Social inequalities in cancer also occur within European countries (15-17). Social inequalities refer to the way in which differing social circumstances across the lifespan generate a social gradient in health through a myriad of complementary mechanisms (18). In terms of cancer, this means that more privileged groups have better outcomes because they have fewer risk factors for cancer, can take advantage of new interventions and screening programmes more quickly, have easier access to health services, and can minimise the social and financial consequences of cancer when it occurs (19). For example, disadvantaged groups are at greater risk for cancers of the lung, stomach, upper aero-digestive tract, and cervix (20). Lower participation in cancer screening programmes and delayed diagnosis has been reported for those with lower socio-economic status (21-23). Socially vulnerable groups, such as people with mental health problems, a physical handicap, children and adults with intellectual and or psychosocial disabilities, illiterate persons, refugees, and prisoners, also suffer from social inequalities in cancer (24-27). Social inequality is also associated with comorbidity, because socially vulnerable groups have greater exposure to multiple risk factors, which makes them more vulnerable to both cancer and other diseases.
Social inequalities in cancer can have their origin in childhood, when social conditions can influence longer-lasting exposures that may lead to increased risk of developing cancer in later life. Behavioural risk factors can be transferred from parents to children, and there is significant evidence that a healthy lifestyle is influenced by positive experiences in early childhood (18, 28, 29). This implies that improving social conditions in early life is likely to confer health benefits for the rest of an individual’s lifetime (30).
Unacceptable inequalities exist in the provision of cancer care. A significant proportion of European citizens have inadequate access to surgery, radiotherapy and systemic therapies. These treatments have been shown to prolong lives and can achieve long-term cures (31, 32). Access to innovative treatments, including personalised medicine, a number of which have demonstrated substantial therapeutic benefit, is also denied to a significant number of European citizens (33).
Cancer care and control does not stop when initial treatment ends. Living with and beyond cancer must be underpinned by cancer policies that support survivorship and rehabilitation. For many people who survive cancer, transitioning to a normal and productive life can be extremely challenging. It may also involve suffering from discrimination because of perceived stigma related
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to the disease. Socially disadvantaged groups face greater unmet need for rehabilitation services (34), and they have more difficulties returning to work (35).
Social inequalities in cancer outcomes also have significant financial consequences for individuals and major economic consequences for Member States and the European Union. They account for 15% of social welfare system costs and 20% of the cost of health systems in the EU (36). The societal burden of cancer in Europe is also reflected in huge losses in productivity due to early death (€42.6 billion a year) and lost working days (€9.43 billion a year) (37). Analysis of GLOBOCAN figures from 30 European countries confirms the significant lost productivity costs due to premature cancer-related mortality (38).
The economic burden of home or family care of cancer patients is substantial (39) and might be even more costly in terms of time spent in caregiving, learning caregiving skills and sacrifice of leisure time in families without resources to hire a formal caregiver (40). Caregiving also leads to reduced working hours (41), wage penalties (42), and disbursements for medical treatments (43). As female family caregivers report higher levels of stress and burden than male caregivers (44), caregiving for cancer patients is also related to gender inequality.
A central tenet of this paper is that social inequalities in cancer are not only financially intolerable but unethical. The EU thus has a responsibility to patients and the wider population to take measures to address these inequalities, both for the 3 to 4 million citizens who develop cancer every year, and more generally for the entire European population, up to half of whom will be expected to develop cancer at some point in their lives.
Social inequalities in cancer have common roots, both across the continent of Europe and among different social groups within the population. They should therefore be addressed at the European level, through strengthened collaboration between Member States, European institutions and key European and national stakeholders. Policy makers, health and social care professionals, and civil society must become aware of the unfair and avoidable nature of these inequalities. There are many examples that show the way in which EU-level cooperation can be of added value in cancer control, for example the European Partnership for Action Against Cancer (45).
This policy paper is a product of Work Package 5 (WP5) of the Cancer Control Joint Action initiative of the EU. It provides practical recommendations on which the European Commission and Member States can build and implement concrete actions to reduce social inequalities in cancer. It aims to promote equity-oriented policy making related to cancer prevention and control by highlighting practical actions to tackle social inequalities in cancer at the European and national levels, thus ensuring that reducing social inequalities in cancer is a top priority within European and national strategies on cancer prevention and control, especially through the National Cancer Control Plans.
These recommendations reflect contributing experts’ analysis of the current challenges that are faced by EU Member States and the shared learning that can be achieved from the approaches which individual Member States have taken to address these challenges. In addition, the recommendations are informed by a survey that was sent to Member States (see Table 1). A call for experts was launched in July, 2015 by the European Commission, and 23 experts were selected in order to review the policy paper drafts. A literature review was performed between September and October of 2015 to identify evidence of cancer inequalities and any regional, national and European-wide strategies designed to tackle them.
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Cancer Control Joint Action – Policy Papers
In 2016 Member States were surveyed on their experiences in tackling social inequalities in cancer. We received 7 completed surveys, and the information was incorporated into this policy paper with the reference “Member States Survey, 2016”. Examples identified from the literature review have been included to illustrate all of the recommendations in this paper. Information provided by Member States in the survey was used to complement these examples.
Table 1.  Survey sent to Member States to determine the current situation and collect experiences on tackling social inequalities in cancer.
1.  Has the equity perspective been included in the cancer control plan or cancer policy of your country? Yes    Partially   No    Short comment   (in all questions of this survey these answer options were included)
2.  Has evidence of cancer inequalities in your country been assessed?
3.  Have any information gaps in cancer inequalities been identified in your country?
4.  Have the cancer policies related to health promotion and prevention targeted health inequalities?
5.  Is the cancer policy/strategy of your country linked to a “Health in all Policies” strategy? (working beyond the health sector)
6.  Has a cancer trans-disciplinary working group been organised, including inequalities experts?
7.  Are the cancer professionals of your country being trained to address special needs of vulnerable groups in the population?
8.  Have community and patient participation mechanisms been implemented during the process of cancer policy development?
9.  Has equity been embedded in every cancer programme or service at the level of public health and healthcare provision? (For example by using an equity assessment tool)
As causes of cancer inequalities are multiple and inter-related, the action to tackle them needs to be interconnected across levels and sectors. Therefore, we are also interested in examples of actions and policies to address health inequalities carried out in your country. Regarding this issue, we have available the following information extracted from a complete study carried out by Sir Michael Marmot and published in the report: “Health inequalities in the EU — Final report of a consortium.” Consortium lead: Sir Michael Marmot. European Union 2013 http://ec.europa. eu/health/social_determinants/docs/healthinequalitiesineu_2013_en.pdf
Please check the following figure, explained in the table, and answer the question below. From your knowledge and experience in your ministry:
10.  Does the response to health inequalities in your country remain in the same cluster? Yes    No 
  It has improved
  Now It is in cluster: 1, 2, 3
  It has worsened
  Now It is in cluster: 1, 2, 3
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InequalitiesCancerCancer PreventionHealthAccess