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

Abstract

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.