- Email: [email protected]
Engaging NGOs in national cancer-control efforts
Comment
Engaging NGOs in national cancer-control efforts Within two decades, more than 22 million people will be diagnosed with cancer every year.1 In view of this escalating global burden, organisations such as the WHO and Union for International Cancer Control (UICC) have encouraged countries to advance cancer control and engage in global action to address non-communicable diseases.2,3 For more than 30 years, WHO has promoted the development of national cancer-control programmes to address the burden of cancer.4 The UICC describes national cancer-control plans as the foundation stone of comprehensive cancer control, and establishment of effective cancer-control programmes in all countries is the first target of the World Cancer Declaration.3 WHO, UICC, and other global, regional, and national organisations (eg, the European Partnership for Action Against Cancer and American Cancer Society) have produced resources to support the development and implementation of these national programmes. Although governments have primary responsibility for control of non-communicable diseases, the new Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–20 (GAP)5 emphasises collaboration and engagement of all sectors of society as essential for success. Equally, WHO urges member states to involve all key stakeholders in cancer-control planning, implementation, and assessment, including non-governmental organisations (NGOs) and community-based organisations.2 These statements highlight the important role non-government cancer organisations have in reduction of the effect of cancer on communities, either
in the absence of, or in complement to, government and private services. The question then arises, is whether there is evidence of such commitment to engaging NGOs in cancer control in reality, or is it just rhetoric? As a first step to explore the engagement of NGOs in national cancer control efforts, we investigated how cancer NGOs and their roles are described in national cancer-control plans. We searched Google for eligible plans published in full in English (summaries excluded) with the terms “cancer” and “plan”, “strategy”, or “policy”, with and without country names. We did not include strategies integrated in broader health policies, additional implementation plans, or topic-specific plans (eg, tobacco-control strategies). We also did targeted searches of the websites of national NGOs and ministries of health of countries reported to have a national cancer-control plan by WHO6 and UICC.7 Plans from 12 such countries could not be located and three were published in languages other than English. Ten plans were identified for countries that did not have a plan according to WHO or UICC data. Overall, we retrieved 26 plans. 17 were from countries in Europe (including the four countries and one Crown dependency of the UK), four from Oceania, two from Africa, two from Asia, and one from North America. We searched each plan with text-search tools for terms including “nongov”, “non-gov”, “NGO”, “charit”, “volunt”, “civil”, “third”, and “society” with or without the names of national cancer NGOs to extract data about how NGOs were described. Two independent coders analysed all mentions with a predetermined
Description
Countries
Partner
Acknowledges the national cancer NGO as a partner (driver, lead organisation, or co-funder) in development and implementation of the plan
Canada, New Zealand, UK
Prescribed role
Prescribes a role for national cancer NGOs in implementation of specific strategies or France, Scotland actions with some description of the organisation’s role and nature of the alliance
Nominal role Specific
Nominates specific cancer NGOs as responsible for (or a stakeholder in) specific actions or domains, but without detail about their role
Albania, Bangladesh, Ireland, Netherlands, Qatar
Unspecified
Nominates unspecified NGOs (or synonymous terms such as civil society, third sector, or voluntary organisations) as responsible for or a stakeholder in specific actions or domains
Cyprus, Estonia, Hungary, Isle of Man, Kenya, Mauritius, Northern Ireland, Slovenia, Wales
Cursory Brief acknowledgement only of named or unspecified NGOs (or synonyms) in the Federated States of Micronesia, Malta, Marshall acknowledgment front matter of the plan (eg, acknowledgments or foreword by government minister) Islands, Norway, Palau, Spain, Turkey NGO=non-governmental organisation.
Table: Framework of engagement of NGOs in national cancer-control plans
1044
www.thelancet.com/oncology Vol 14 October 2013
Comment
coding scheme and ranked national cancer-control programmes according to their level of engagement of NGOs (table). All the national cancer-control plans reviewed included at least one reference to NGOs. However, only three plans acknowledged a national cancer NGO as a partner (driver, lead organisation, or co-funder) in development and implementation of the plan. Another two plans described roles for NGOs in joint or sole implementation of specific actions or strategies and provided some detail of the NGO’s contribution to cancer control. In all other national cancer-control plans, mention of NGOs was limited, with no or little detail about their contribution to the plan. In 14 plans, one or more NGOs were given a nominal role such as listed as being responsible for, or a stakeholder in, specific actions such as promoting cancer screening or improving patient information. No detail was provided about the nature of the role or how nominated stakeholders would implement strategies. In five of these 14 plans, a specific cancer NGO was nominated as responsible for implementation of particular cancer-control actions. In the other nine, responsibilities were allocated to unspecified NGOs even when that responsibility was as significant as co-funding actions or reviewing effectiveness of the strategy. In seven plans, the only reference to NGOs was a cursory acknowledgement in the front of the report. Four plans credited the contribution of a specific NGO; another three noted only that NGOs (eg, voluntary or third-sector organisations, civil society, or other unspecified NGOs) participated in the development process or may have a role in implementation. References to NGOs in national cancer-control plans might be an inexact marker of the existence of formal partnerships between governments and NGOs, and could understate the actual contribution of NGOs to these plans. However, the absence of references to NGOs in most national cancer-control plans supports the view that essential community partnerships for cancer control are often missing.8 This theory is consistent with results of a recent survey of European nations about the status of national cancer-control programmes where, although most respondents reported there were alliances with relevant stakeholders to implement measures within the national plan, most did not define the exact nature of those alliances.9 www.thelancet.com/oncology Vol 14 October 2013
A limitation of our review was that only plans published in English were included and national cancercontrol plans outside of this context might differ. Furthermore, our search produced different results from the WHO and UICC lists. This divergence probably shows the limitations of self-reported survey data and information sources that might not represent the official view of the country, and the dynamic status of national cancer-control plans that arises because of changing national social and political contexts. An understanding of how national cancer-control plans have been operationalised is needed. In this regard, research that includes network analysis would further improve understanding of how intersectoral partnerships and collaborations contribute to cancer control, taking into account cultural differences. Although engagement and integration of all stakeholders is a stated goal in most resolutions and plans for control of cancer and other non-communicable diseases, our review of national cancer-control plans and related literature found NGOs’ contributions across the spectrum of cancer-control activity to be poorly described, with little and seemingly token recognition in most plans. Despite the increasing demand and probable benefits of a greater role for cancer NGOs in cancer control, a disconnect remains between rhetoric and reality. As governments acknowledge the growing burden of cancer and other non-communicable diseases while juggling competing priorities and economic and health-system constraints, the notion of shifting public responsibilities to civil society becomes more attractive. Crucially, this shift is occurring at the same time as cancer NGOs are facing increasing demands, with the combined effects of government austerity measures, a challenging fundraising environment and an increasing burden of cancer. The GAP acknowledges the need for active participation of civil society in efforts to address NCDs and to ensure public-health policy is responsive to evolving needs.5 If communities are to be empowered in global efforts to control cancer and other noncommunicable diseases, commitment must be given to effective engagement of all stakeholders and catalysis of intersectoral partnerships. Our examination found little evidence of such commitment. Global cancer-control activity into the future will be compromised unless all relevant stakeholders are genuinely engaged at the planning stage. 1045
Comment
*Jeff Dunn, Lisa Herron, Cary Adams, Suzanne Chambers Cancer Council Queensland, Brisbane, QLD, Australia (JD, LH, SC); Union for International Cancer Control, Geneva, Switzerland (CA); Griffith Health Institute, Griffith University, Southport, QLD, Australia (JD, SC); and Prostate Cancer Foundation Australia, Sydney, NSW, Australia (SC) jeff[email protected] We declare that we have no conflicts of interest. 1
2
3
Bray F, Jemal A, Grey N, Ferlay J, Forman D. Global cancer transitions according to the Human Development Index (2008-2030): a population-based study. Lancet Oncol 2012; 13: 790–801. WHO. 58th World Health Assembly resolution on cancer prevention and control (WHA58.22). 2005. http://www.who.int/cancer/eb1143/en/ (accessed March 11, 2013). UICC. World cancer declaration. Geneva: Union for International Cancer Control, 2008.
4
5
6 7
8
9
Chestnov O. Foreword from the World Health Organization. Supporting national cancer control planning: a toolkit for Civil Society Organisations (CSOs). Geneva: Union for International Cancer Control and Association of European Cancer Leagues, 2012. WHO. Global action plan for the prevention and control of noncommunicable diseases 2013-2020. Endorsed by the 66th World Health Assembly. Geneva: World Health Organization, 2013. WHO. Noncommunicable diseases country profiles 2011. Geneva: World Health Organization; 2011. Union for International Cancer Control. Global status of population-based cancer registries and national cancer control plans. 2012. http://www.uicc. org/advocacy/tools/global-status-cancer-registries-and-cancer-plans (accessed April 29, 2013). Trapido EJ, Borras JM, Burton R, Samiei M, Elwood M. Critical factors influencing the establishment, maintenance and sustainability of population-based cancer control programs. Tumori 2009; 95: 637–45. Gorgojo L, Harris M, Garcia-Lopez E. National cancer control programmes: analysis of primary data from questionnaires. Ljubljana, Slovenia: European Partnership for Action Against Cancer (EPAAC), 2012.
National Cancer Institute/Science Photo Library
The proton problem
This is the second of three Comments on existential problems of radiation oncology See Comment Lancet Oncol 2013; 14: 802–04
1046
In the first Comment in this three-part series on the existential questions facing radiation oncology, I described the problems engendered by technological innovation. In this Comment, I discuss another existential question: is proton therapy essential to the modern-day practice of radiation therapy? The question was framed for me by a young radiation oncologist who asked, “is there any point in pursuing this specialty if they don’t have protons at my institution? Will I, by definition, be committing malpractice if I treat patients without protons?”. The superior radiation dose distribution created by protons, by contrast with photons, electrons, or neutrons, is well described and represents an incremental improvement in radiation therapy dose delivery. Technological innovation allows us to reduce the dose of radiation administered to normal tissue uninvolved by tumour. To the extent that we can reduce radiation dose to healthy tissue while maintaining an elevated dose to the tumour, the therapeutic index improves.1 A popular quip used to summarise the arguments in favour of moving forward with the use of protons in the absence of randomised trials goes, “you don’t need a randomised controlled trial to prove the effectiveness of the parachute.”2 Why would anyone select an inferior dose distribution? Can you imagine any patient who, given the chance, would prefer to have more healthy tissue irradiated than necessary? By this reasoning therefore, clinical trials of protons are unnecessary and, perhaps, even immoral. There is no rationale for
a long-term and costly study examining if there is an advantage to administering a lower dose of a toxic agent to normal tissues.1 Herman Suit asserted four truisms related to randomised trials and proton therapy. First, there is no benefit to any patient for any radiation of normal tissue not suspected of involvement by tumour. Second, complications never occur in unirradiated tissues. Third, ascertaining whether a smaller treatment volume is superior is not a medical research question. And fourth, experimentation only investigates the magnitude of gain for a superior dose distribution or its cost—it does not ascertain the necessity of seeking that gain.3 The history of radiation oncology is one of physicists bringing technologies to the attention of clinicians who, subsequently, investigate their efficacy. This was true for Wilhelm Roentgen and the production of x-rays from evacuated tubes, Marie Curie and Henri Becquerel on the use of radioisotopes for brachytherapy, Harold Johns’ introduction of cobalt 60, and for Robert Wilson and proton therapy. No-one insisted upon randomised clinical trials to prove the effectiveness of a linear accelerator compared with a cobalt-60 machine. Why would the standard to which protons are held be any different? There is an instructive historical account to frame this debate. Among the many reporters who rushed to interview Roentgen after his discovery of the x-ray was HJW Dam, an Englishman and correspondent for the Canadian McClure’s Magazine. Dam’s interview is www.thelancet.com/oncology Vol 14 October 2013
Engaging NGOs in national cancer-control efforts Within two decades, more than 22 million people will be diagnosed with cancer every year.1 In view of this escalating global burden, organisations such as the WHO and Union for International Cancer Control (UICC) have encouraged countries to advance cancer control and engage in global action to address non-communicable diseases.2,3 For more than 30 years, WHO has promoted the development of national cancer-control programmes to address the burden of cancer.4 The UICC describes national cancer-control plans as the foundation stone of comprehensive cancer control, and establishment of effective cancer-control programmes in all countries is the first target of the World Cancer Declaration.3 WHO, UICC, and other global, regional, and national organisations (eg, the European Partnership for Action Against Cancer and American Cancer Society) have produced resources to support the development and implementation of these national programmes. Although governments have primary responsibility for control of non-communicable diseases, the new Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–20 (GAP)5 emphasises collaboration and engagement of all sectors of society as essential for success. Equally, WHO urges member states to involve all key stakeholders in cancer-control planning, implementation, and assessment, including non-governmental organisations (NGOs) and community-based organisations.2 These statements highlight the important role non-government cancer organisations have in reduction of the effect of cancer on communities, either
in the absence of, or in complement to, government and private services. The question then arises, is whether there is evidence of such commitment to engaging NGOs in cancer control in reality, or is it just rhetoric? As a first step to explore the engagement of NGOs in national cancer control efforts, we investigated how cancer NGOs and their roles are described in national cancer-control plans. We searched Google for eligible plans published in full in English (summaries excluded) with the terms “cancer” and “plan”, “strategy”, or “policy”, with and without country names. We did not include strategies integrated in broader health policies, additional implementation plans, or topic-specific plans (eg, tobacco-control strategies). We also did targeted searches of the websites of national NGOs and ministries of health of countries reported to have a national cancer-control plan by WHO6 and UICC.7 Plans from 12 such countries could not be located and three were published in languages other than English. Ten plans were identified for countries that did not have a plan according to WHO or UICC data. Overall, we retrieved 26 plans. 17 were from countries in Europe (including the four countries and one Crown dependency of the UK), four from Oceania, two from Africa, two from Asia, and one from North America. We searched each plan with text-search tools for terms including “nongov”, “non-gov”, “NGO”, “charit”, “volunt”, “civil”, “third”, and “society” with or without the names of national cancer NGOs to extract data about how NGOs were described. Two independent coders analysed all mentions with a predetermined
Description
Countries
Partner
Acknowledges the national cancer NGO as a partner (driver, lead organisation, or co-funder) in development and implementation of the plan
Canada, New Zealand, UK
Prescribed role
Prescribes a role for national cancer NGOs in implementation of specific strategies or France, Scotland actions with some description of the organisation’s role and nature of the alliance
Nominal role Specific
Nominates specific cancer NGOs as responsible for (or a stakeholder in) specific actions or domains, but without detail about their role
Albania, Bangladesh, Ireland, Netherlands, Qatar
Unspecified
Nominates unspecified NGOs (or synonymous terms such as civil society, third sector, or voluntary organisations) as responsible for or a stakeholder in specific actions or domains
Cyprus, Estonia, Hungary, Isle of Man, Kenya, Mauritius, Northern Ireland, Slovenia, Wales
Cursory Brief acknowledgement only of named or unspecified NGOs (or synonyms) in the Federated States of Micronesia, Malta, Marshall acknowledgment front matter of the plan (eg, acknowledgments or foreword by government minister) Islands, Norway, Palau, Spain, Turkey NGO=non-governmental organisation.
Table: Framework of engagement of NGOs in national cancer-control plans
1044
www.thelancet.com/oncology Vol 14 October 2013
Comment
coding scheme and ranked national cancer-control programmes according to their level of engagement of NGOs (table). All the national cancer-control plans reviewed included at least one reference to NGOs. However, only three plans acknowledged a national cancer NGO as a partner (driver, lead organisation, or co-funder) in development and implementation of the plan. Another two plans described roles for NGOs in joint or sole implementation of specific actions or strategies and provided some detail of the NGO’s contribution to cancer control. In all other national cancer-control plans, mention of NGOs was limited, with no or little detail about their contribution to the plan. In 14 plans, one or more NGOs were given a nominal role such as listed as being responsible for, or a stakeholder in, specific actions such as promoting cancer screening or improving patient information. No detail was provided about the nature of the role or how nominated stakeholders would implement strategies. In five of these 14 plans, a specific cancer NGO was nominated as responsible for implementation of particular cancer-control actions. In the other nine, responsibilities were allocated to unspecified NGOs even when that responsibility was as significant as co-funding actions or reviewing effectiveness of the strategy. In seven plans, the only reference to NGOs was a cursory acknowledgement in the front of the report. Four plans credited the contribution of a specific NGO; another three noted only that NGOs (eg, voluntary or third-sector organisations, civil society, or other unspecified NGOs) participated in the development process or may have a role in implementation. References to NGOs in national cancer-control plans might be an inexact marker of the existence of formal partnerships between governments and NGOs, and could understate the actual contribution of NGOs to these plans. However, the absence of references to NGOs in most national cancer-control plans supports the view that essential community partnerships for cancer control are often missing.8 This theory is consistent with results of a recent survey of European nations about the status of national cancer-control programmes where, although most respondents reported there were alliances with relevant stakeholders to implement measures within the national plan, most did not define the exact nature of those alliances.9 www.thelancet.com/oncology Vol 14 October 2013
A limitation of our review was that only plans published in English were included and national cancercontrol plans outside of this context might differ. Furthermore, our search produced different results from the WHO and UICC lists. This divergence probably shows the limitations of self-reported survey data and information sources that might not represent the official view of the country, and the dynamic status of national cancer-control plans that arises because of changing national social and political contexts. An understanding of how national cancer-control plans have been operationalised is needed. In this regard, research that includes network analysis would further improve understanding of how intersectoral partnerships and collaborations contribute to cancer control, taking into account cultural differences. Although engagement and integration of all stakeholders is a stated goal in most resolutions and plans for control of cancer and other non-communicable diseases, our review of national cancer-control plans and related literature found NGOs’ contributions across the spectrum of cancer-control activity to be poorly described, with little and seemingly token recognition in most plans. Despite the increasing demand and probable benefits of a greater role for cancer NGOs in cancer control, a disconnect remains between rhetoric and reality. As governments acknowledge the growing burden of cancer and other non-communicable diseases while juggling competing priorities and economic and health-system constraints, the notion of shifting public responsibilities to civil society becomes more attractive. Crucially, this shift is occurring at the same time as cancer NGOs are facing increasing demands, with the combined effects of government austerity measures, a challenging fundraising environment and an increasing burden of cancer. The GAP acknowledges the need for active participation of civil society in efforts to address NCDs and to ensure public-health policy is responsive to evolving needs.5 If communities are to be empowered in global efforts to control cancer and other noncommunicable diseases, commitment must be given to effective engagement of all stakeholders and catalysis of intersectoral partnerships. Our examination found little evidence of such commitment. Global cancer-control activity into the future will be compromised unless all relevant stakeholders are genuinely engaged at the planning stage. 1045
Comment
*Jeff Dunn, Lisa Herron, Cary Adams, Suzanne Chambers Cancer Council Queensland, Brisbane, QLD, Australia (JD, LH, SC); Union for International Cancer Control, Geneva, Switzerland (CA); Griffith Health Institute, Griffith University, Southport, QLD, Australia (JD, SC); and Prostate Cancer Foundation Australia, Sydney, NSW, Australia (SC) jeff[email protected] We declare that we have no conflicts of interest. 1
2
3
Bray F, Jemal A, Grey N, Ferlay J, Forman D. Global cancer transitions according to the Human Development Index (2008-2030): a population-based study. Lancet Oncol 2012; 13: 790–801. WHO. 58th World Health Assembly resolution on cancer prevention and control (WHA58.22). 2005. http://www.who.int/cancer/eb1143/en/ (accessed March 11, 2013). UICC. World cancer declaration. Geneva: Union for International Cancer Control, 2008.
4
5
6 7
8
9
Chestnov O. Foreword from the World Health Organization. Supporting national cancer control planning: a toolkit for Civil Society Organisations (CSOs). Geneva: Union for International Cancer Control and Association of European Cancer Leagues, 2012. WHO. Global action plan for the prevention and control of noncommunicable diseases 2013-2020. Endorsed by the 66th World Health Assembly. Geneva: World Health Organization, 2013. WHO. Noncommunicable diseases country profiles 2011. Geneva: World Health Organization; 2011. Union for International Cancer Control. Global status of population-based cancer registries and national cancer control plans. 2012. http://www.uicc. org/advocacy/tools/global-status-cancer-registries-and-cancer-plans (accessed April 29, 2013). Trapido EJ, Borras JM, Burton R, Samiei M, Elwood M. Critical factors influencing the establishment, maintenance and sustainability of population-based cancer control programs. Tumori 2009; 95: 637–45. Gorgojo L, Harris M, Garcia-Lopez E. National cancer control programmes: analysis of primary data from questionnaires. Ljubljana, Slovenia: European Partnership for Action Against Cancer (EPAAC), 2012.
National Cancer Institute/Science Photo Library
The proton problem
This is the second of three Comments on existential problems of radiation oncology See Comment Lancet Oncol 2013; 14: 802–04
1046
In the first Comment in this three-part series on the existential questions facing radiation oncology, I described the problems engendered by technological innovation. In this Comment, I discuss another existential question: is proton therapy essential to the modern-day practice of radiation therapy? The question was framed for me by a young radiation oncologist who asked, “is there any point in pursuing this specialty if they don’t have protons at my institution? Will I, by definition, be committing malpractice if I treat patients without protons?”. The superior radiation dose distribution created by protons, by contrast with photons, electrons, or neutrons, is well described and represents an incremental improvement in radiation therapy dose delivery. Technological innovation allows us to reduce the dose of radiation administered to normal tissue uninvolved by tumour. To the extent that we can reduce radiation dose to healthy tissue while maintaining an elevated dose to the tumour, the therapeutic index improves.1 A popular quip used to summarise the arguments in favour of moving forward with the use of protons in the absence of randomised trials goes, “you don’t need a randomised controlled trial to prove the effectiveness of the parachute.”2 Why would anyone select an inferior dose distribution? Can you imagine any patient who, given the chance, would prefer to have more healthy tissue irradiated than necessary? By this reasoning therefore, clinical trials of protons are unnecessary and, perhaps, even immoral. There is no rationale for
a long-term and costly study examining if there is an advantage to administering a lower dose of a toxic agent to normal tissues.1 Herman Suit asserted four truisms related to randomised trials and proton therapy. First, there is no benefit to any patient for any radiation of normal tissue not suspected of involvement by tumour. Second, complications never occur in unirradiated tissues. Third, ascertaining whether a smaller treatment volume is superior is not a medical research question. And fourth, experimentation only investigates the magnitude of gain for a superior dose distribution or its cost—it does not ascertain the necessity of seeking that gain.3 The history of radiation oncology is one of physicists bringing technologies to the attention of clinicians who, subsequently, investigate their efficacy. This was true for Wilhelm Roentgen and the production of x-rays from evacuated tubes, Marie Curie and Henri Becquerel on the use of radioisotopes for brachytherapy, Harold Johns’ introduction of cobalt 60, and for Robert Wilson and proton therapy. No-one insisted upon randomised clinical trials to prove the effectiveness of a linear accelerator compared with a cobalt-60 machine. Why would the standard to which protons are held be any different? There is an instructive historical account to frame this debate. Among the many reporters who rushed to interview Roentgen after his discovery of the x-ray was HJW Dam, an Englishman and correspondent for the Canadian McClure’s Magazine. Dam’s interview is www.thelancet.com/oncology Vol 14 October 2013