International Framework for Cancer Patient Advocacy: Empowering Organizations and Patients to Create a National Call to Action on Cancer

Purpose With the rate of cancer and other noncommunicable diseases (NCDs) growing globally, cancer prevention and control efforts are critical internationally. Moreover, since the 2011 United Nations High-Level Meeting on NCDs, the international health and development community has shifted its awareness to include NCDs as a global health priority, especially in developing countries where mortality rates are disproportionately high. Simultaneously, with the dissemination of the World Cancer Declaration and the evolution of cancer control policies, the international cancer community has recognized the value of engaging patients in reducing the global cancer burden. Cancer advocacy programs that involve patients, survivors, and nongovernmental organizations (NGOs) have increasing opportunities for global impact. Methods We developed a framework over 4 years through implementation of two pilot projects. We created a series of trainings and tools to build the capacity of local NGOs and patients to plan and implement a forum for patients with cancer and to create and disseminate a national call to action. The framework was piloted in South Africa from 2009 to 2011 and Japan from 2012 to 2014, and results were measured through postproject surveys completed by members of the collaborative working group and interviews with the in-country partner. Results The framework is globally relevant and could be adapted and implemented in low- and middle-income countries to amplify patient voices in the policymaking process, increase grassroots mobilization, and improve health systems and infrastructure through addressing patient needs. Conclusion With the dominant paradigm of global health in developing countries—which has previously focused on HIV/AIDS, maternal and child health, tuberculosis, and malaria—shifting to adapt to the burgeoning NCD burden, effective patient-centered advocacy frameworks are critical to the success of NCD control.


INTRODUCTION
Cancer is a leading cause of death around the world. 1 The global cancer community has acknowledged that without significant efforts, rates of new cancer cases could rise from 14 to 22 million annually in the next two decades. 1 Advocacy plays a pivotal role in cancer control planning 2,3 and is necessary in any resource setting to influence policy and improve delivery of cancer control. 4 The WHO 2008 practical guide on cancer control policy and advocacy and 2013 to 2020 Global Action Plan for the Prevention and Control of Noncommunicable Diseases (NCDs) both articulate that advocacy is a critical strategy in improving cancer control and care delivery nationally and globally. 5,6 Patients with cancer, survivors, and caregivers are in an ideal position to provide insight into gaps within systems of care. Through capacity building, their voices are a powerful tool in advocating for improvements in knowledge, practice, policy, and services and in empowering others to share their stories. Moreover, cancer patient advocacy supports national efforts toward achievement of NCD and cancer control targets, such as those outlined in the Global Action Plan and in the World Cancer Declaration. This article presents a framework for empowering patients, survivors, and organizations to implement a comprehensive, patient-informed national call to action on cancer through planning, implementing, and leveraging outcomes of a patient forum.

CONCEPT OF CANCER PATIENT ADVOCACY
Definitions of cancer patient advocacy vary in the literature; here, we define this advocacy as a special article executive summary systematic approach to promoting a cancer-related issue and motivating others to take action. This includes policy advocacy through both grasstops and grassroots approaches. 7 Cancer patient advocacy provides a framework to ensure meaningful involvement of the community in decisions affecting patient lives. 8 It is recognized that cancer patient advocacy provides a voice for patients and raises awareness of needs 8,9 ; patient advocacy is also deeply rooted in the concept of empowerment, which, according to the WHO and Gray and Doan, 10,11 posits that individuals understand their own needs better than others and that it is ideal for people to have control in shaping the direction and events of their lives. 11,12 Furthermore, the concept of participation builds on the idea of empowerment, because empowering individuals implies providing for active participation in their own care. 12

ORIGINS AND THE GROWING GLOBAL MOVEMENT
The history of cancer patient advocacy varies globally. In the West, it has had a robust history over the last 30 years. In the United States in particular, it has roots in the successful civil, women's, human, and consumer rights and HIV/AIDS advocacy movements. [13][14][15][16] Pioneering organizations of cancer advocacy, such as American Cancer Society, began implementing patient engagement activities as early as the 1950s (with Reach to Recovery program), and others like Susan G. Komen for the Cure and the National Coalition for Cancer Survivorship launched major activities in the 1980s and 1990s. Rapid growth of these activities, particularly among breast cancer organizations, successfully led to policy changes to benefit survivors, improvement in awareness about survivorship, and the introduction of survivor-driven research. 2,14,[16][17][18] Over the last few decades, cancer advocacy in the United States has led to advocate groups gaining significant influence over policymakers, researchers, and health care providers 19 and has become a critical part of the shift in the health care paradigm from illness-centered to patient-centered care, where patients and families are more actively participating in their care and in the creation of services and policies. [19][20][21] Although organizations in countries such as Indonesia, Egypt, Canada, Chile, and the United Kingdom have engaged in cancer advocacy for more than 15 years, 4,19,22 in many other countries, cancer advocacy is a more novel concept. The ethos and language of advocacy lack consistency across many cultures, and the word for advocacy is often not translatable directly. 15,18 That said, there is current growth in advocacy activities in many low-and middle-income countries (LMICs), particularly in Africa and Latin America. [23][24][25] This burgeoning activity is evident in the context of the massive call to action issued through the 2011 United Nations Summit on NCDs and the resulting Global Action Plan, Monitoring Framework, and Global Coordination Mechanism, which have evolved as part of the large-scale response to NCD and cancer problems. 26 The WHO reported that as of 2010, 107 countries had national operational policies or action plans for cancer. 27 However, the reality at the local level, especially in LMICs, is that there remains a dearth of infrastructure to address cancer, 28,29 and it is  Policy environment can change from highly restrictive to receptive, 32 and throughout a long-term advocacy campaign, varying strategies will be used to adapt to the evolving political environment. 32 It is therefore critical to assess environment in advance of planning advocacy effort to maximize potential impact.
likely that physical, emotional, and practical needs of patients are not being fully met. Patient advocacy can improve access to treatment, raise awareness of the value of prevention, 19,30 and ensure that patient viewpoints are integrated into planning and policy. 15

PATIENT FORUMS
Cancer patient forums are stakeholder meetings addressing a broad range of quality-of-life and survivorship issues. The objectives of forums are determined by local stakeholders but may include providing data, raising awareness of key system issues from the patient perspective, or improving resources and infrastructure. 31 Forums convene dynamic groups of stakeholders like nongovernmental organization (NGO) leaders, patients, survivors, caregivers, health care professionals, media, government leaders, and researchers to dialogue. 31 The implementation of structured patient forums was undertaken by the Union for International Cancer Control (UICC) in 2004, as a result of reports of similar successful initiatives in France and Italy in the late 1990s, and was based on the impact of the US President's Cancer Panels. We built on this initial concept by expanding the best practices of the UICC and creating a structured, replicable framework for patient forum implementation.
The International Patient Advocacy Framework (IPAF) was developed to support a comprehensive, patient-informed national call to action on cancer through planning, implementing, and leveraging the outcomes of patient forums. It proposed elevating patient and survivor voices to bring visibility to gaps in cancer control and highlight the need for cancer to be a higher priority on national health agendas.
Long-term outcomes of implementation of the IPAF are two-fold: 1) contribution toward addressing needs of patients with cancer nationally through improvements in attitudes, knowledge, practice, policy, systems, and services; and 2) national development of a new or existing patient advocacy movement. Figure 1 presents the IPAF. The framework was developed over 4 years through implementation of two pilot projects in different countries. Using the program evaluation of the UICC, we created a series of trainings and tools to build the capacity of local NGOs, patients, and survivors to plan and implement a patient forum and to create and disseminate a national call to action. Pilot countries were selected based on criteria including: substantial cancer incidence and survivorship rates, some history of advocacy, basic level of care infrastructure, base of cancer civil society organizations, and strong media infrastructure. South Africa and Japan were selected with the intent of testing the framework in different contexts.

METHODS
The framework was piloted in South Africa from 2009 to 2011, and results were measured through postproject surveys completed by members of the collaborative working group and interviews with the in-country partner (lead agency). Results from surveys were analyzed, and minor changes were made to the framework. It was then piloted in Japan from 2012 to 2014. Results were measured again in the same means.
In both countries, the first step in launching the project was to select a lead agency with responsibility for building a working group to support planning and implementation of the forum, launching a call to action, acting as secretariat for the working group, facilitating administrative duties, and guiding strategic vision for the long-term advocacy effort. A seed grant was awarded to the lead agency to support forum preparation. An initial strategy session was held, which resulted in a logic model and project plan. Table 1 lists key aspects of the logic model for both pilots implementing the framework. As Clark and Stovall 11 note, there is a necessary process to transition from a cancer survivor to an advocate, which "requires development of new skills, such as information seeking, communication, problem solving, and negotiation." 11p240 For patients and NGOs to be effective change agents, it is critical that they possess the competences to communicate with researchers and providers 14 as well as policymakers and media. The framework incorporates in-person trainings on topics including:

APPLICATION OF FRAMEWORK
• Grasstops advocacy fundamentals • Identifying and prioritizing issues and solutions • Crafting and delivering messages • Creating and launching a national call to action • Action planning (grassroots campaign and patient forum) In the 12 months after initial trainings, ongoing technical assistance was provided, and the local working group produced outputs including but not limited to: vision for the goals and objectives of the forum, agenda, fundraising strategy, community engagement activities, dissemination plan for the call to action (including social media strategy), and a monitoring and evaluation plan. Additional inperson media trainings were also conducted before the forum launch. Table 2 lists the outcomes of both pilot projects. It is acknowledged that evaluating advocacy is inherently challenging and requires a different approach than evaluation of programs, given the nonlinear nature of advocacy efforts and the rapidly changing environment in which they occur. [32][33][34] In addition, best practices in advocacy evaluation articulate that measurement of intermediate outcomes, such as capacity building, is just as critical as assessment of a final outcome, such as policy change. [32][33][34][35] Given this and the fact that long-term results in both countries are still being assessed, our results focus mostly on short-and intermediate-term impacts.

RESULTS
Results illustrate that the framework empowered organizations and patients to create and launch a national call to action on cancer through implementing a patient forum. Although the sharing of patient voices can happen in a variety of settings, the structure of the framework as an advocacy tool makes it a unique mechanism for patients to share their experiences in a setting that ultimately can contribute toward addressing patient needs through increasing community awareness and mobilization, improving services and resources, and changing policy over time. Involving patients and caregivers in the advocacy process brings a human face and a compelling urgency to addressing cancer, and integrating the voices of marginalized populations helps to ensure that cancer control strategies are person centered. 4 These results build on the small-wins approach, which posits that successes in advocacy that unfold in an incremental fashion are needed because they "can set in motion forces that can lead to increased higher level interventions" 8p313 ; the results we saw in South Africa and Japan are small wins and are indicative that with continued advocacy activity, greater impact is a possible trajectory.
There are several examples of similar models of cancer advocacy implemented in the United States over the last decade illustrating longer term impact. Two examples are summarized in Table 3. Models like those of the Adolescent and Young Adult Oncology Progress Review Group and the National Action Plan for Cancer Survivorship, which employed frameworks similar to that of the IPAF through multistakeholder collaboration and inclusion of patient voices, present compelling evidence to demonstrate the potential of this type of patient advocacy approach for program and policy development and improvement in cancer care and control.
The South African forum marked the first time to our knowledge that patients, civil society, policymakers, and health care providers gathered to engage in dialogue about cancer control. In the follow-up survey, one member of the working group in South Africa noted that the greatest success of the forum was that "government attended and heard our voices." The forum and call to action marked important first steps on the road toward policymakers considering patient views in the policymaking process. This is consistent with the idea that "government leaders often recognize the value of responding to the needs of their constituents ... when those needs become highly visible," 30p352 and "finding ways of genuinely involving cancer [survivors] will greatly strengthen advocacy in the long run." 4p20 In Japan, stakeholders sought to build awareness of the challenges that patients face among the public and create a base of informed community members who could mobilize to support a grassroots campaign. Results such as the ongoing inclusion of patient voices in media postforum and release of the call to action and growth of the related Over Cancer Together campaign indicate early success. These results are echoed in the literature, which notes that a critical aspect of advocacy is strategic communication, which informs community about challenges and mobilizes it to find solutions collaboratively. 4 The framework supported both country initiatives in achieving their different goals: a grasstops approach in South Africa and a grassroots approach in Japan. We suggest that this occurred as a result of several critical success factors, summarized in Table 4.

DISCUSSION
Patient advocacy can be challenging as a result of stigma, which acts as a significant barrier to accurate surveillance (because of individuals fearing diagnosis or treatment) 39 and has led to challenges in survivors sharing their cancer experiences for fear of judgment or discrimination. In some cases, the storytelling training can act as a means to reduce stigma; however, stigma and fear may prevent patients and survivors from desiring to participate. That being said, the inclusion of raw, powerful patient stories in both countries was a significant contributor to success of the model because of the transportation effects of storytelling. This supports existing data suggesting that stories can change attitudes and affect beliefs and action "by presenting emotionally powerful information along with vivid mental images, while reducing counter arguing." 36pS175 The WHO notes that "coalition building ... and social mobilization are critical to the success of advocacy efforts" 4p19 ; in addition, "involving health-care professionals and researchers is also critical as this ensures that advocacy plans are evidence-based and relevant." 4p7 Furthermore, experts state that ultimately, the benefits of collaboration in advocacy include "a reduction in redundancy of services, conservation of human and financial resources ... and a population of survivors who are empowered and engaged advocates." 7p2313 However, cultivating meaningful collaboration between NGOs and other stakeholders is a challenging and nuanced endeavor as a result of competition (for funding, awareness, and public engagement) and competing priorities. We found that it is critical for partnering NGOs to build trust and find a shared vision of ultimate benefit for all partners, one that surmounts individual organizational goals toward a more powerful common agenda.
There are limitations to our framework. One is the fact that it has only been tested in two countries. We anticipate that additional testing in other regions will be valuable in further demonstrating the impact of the framework as a global model.
As discussed previously, it was determined at the outset of both pilots that we would only measure the short-and intermediate-term impacts. It was requested that lead agencies work collaboratively to track and share long-term impacts, but this was not required. As such, these results largely reflect the short-and intermediate-term impacts, because long-term outcomes are still being assessed by lead agencies. Despite this, initial impacts strongly suggest that with continued advocacy activity, stakeholders are making notable progress toward seeing long-term impacts. Another limitation is the lack of data collected from patients who participated in the projects. The scale of our evaluation limited us to surveying lead agencies with which we worked directly. In addition, given the complexities of policy and system change in particular, the framework should be viewed as a mechanism to contribute to long-term outcomes, as opposed to being the sole factor to which long-term outcomes are attributed.
In conclusion, given our results, the work by Durstine and Leitman, 25 and illness narrative studies like that by Green, 36 we suggest that there is an opportunity to further study the effects of patient storytelling on personal and collective empowerment and its influence on disclosure of diagnosis, contributing to reduction of stigma. On the basis of limited qualitative data collected from participants in the Japanese training, it is suggested that the framework benefitted patients by providing a meaningful way to engage in the fight against cancer, connect with other patients in a supportive setting, and to heal and find meaning in the cancer journey. 36 We suggest that future research explore the impact of patient storytelling globally as a means of social support and psychosocial healing as well as its impact on influencing others to engage in grassroots advocacy.
On the basis of these results, we believe that the IPAF is globally relevant and could be adapted and implemented in other countries to amplify patient voices in the policymaking process, increase grassroots mobilization, improve health systems through addressing patient needs, and ultimately support countries in meeting NCD and cancer control targets. Further research is also needed on the long-term impacts of cancer patient advocacy; it would be particularly beneficial to see other countries implement the framework and track outcomes longitudinally. Ultimately, people will benefit if health systems globally can evolve toward a place of sustained and meaningful patient participation and engagement.  Organizations that are invested in and have some knowledge of cancer advocacy; furthermore, working with organizations that already pursue some type of advocacy activity will increase likelihood of sustainability Media infrastructure ‡ Basic traditional and new media infrastructure; success in building grassroots movement largely depends on leveraging media to bring awareness to patient stories and issues being raised