Did you know that less than 50 countries in the world have created national cancer control plans? Moreover, even in countries that have some national cancer control agenda, there are still significant breakages within the health care system in terms of the physical, emotional, and practical needs of cancer patients. These issues could range from a lack of data or lack of a cancer registry, to inadequate insurance coverage, to patients being excluded from decision making processes that have a direct impact on their treatment. However, we know that cancer patients and their families can help us learn what is working well in a health care system and what needs to be addressed in a country. Their voices are a powerful tool in advocating for change and improvements in attitudes, knowledge, practice, policy, systems, and services. The Patient Empowerment Initiative, a project LIVESTRONG launched in 2009 with American Cancer Society, was designed to leverage the patient voice in order to bring visibility to gaps in cancer control and highlight the need for cancer to be a stronger priority on a country’s health agenda. The overall goal of the Patient Empowerment Initiative is to support at a country level, a comprehensive, survivor-informed national call to action on cancer.
The concept of the Patient Empowerment Initiative was inspired by a series of Cancer Patient Forums that the UICC (Union for International Cancer Control) supported beginning over 15 years ago. These Forums were led by cancer NGOs and took place in France, Turkey, Italy, and Portugal, Chile, and Malaysia among other places. In each country, one organization, or a coalition of organizations worked together to plan a 1-3 day summit which allowed cancer patients, their families, and healthcare providers to share personal stories about the issues in the healthcare system and engage in dialogue about these issues with key decision makers and media. These forums have been successful in raising awareness of cancer patients’ needs, and creating meaningful policy change for cancer patients- for example, after the 2004 French Forum, French President Jacques Chirac publicly declared cancer one of his top three priorities.
Recently, the American Cancer Society and LIVESTRONG identified an opportunity to build on the success of the UICC Patient Forum model by creating a framework for organizations in countries ripe for major cancer advocacy activity to learn how to plan and hold a Patient Forum. We began this project in 2010, first piloting it in South Africa, where their first Patient Forum, Voice of Cancer, was successfully held in May of 2011.
Our model includes series of trainings to empower local NGOs to work collaboratively to plan and host a patient forum. Over the course of 18 months, we provide training on how to strategically assess key cancer issues in a country (from the patient and NGO perspective) and construct an advocacy plan around them; how to develop potential solutions, build support with key players, how to evaluate advocacy efforts; media engagement tactics, and storytelling/public speaking training for the patients themselves.
In 2011, we launched this initiative in Mexico with key local partner Fundación Rebecca de Alba. We are excited to see their work progressing, and the Mexican cancer patient forum will occur in September of 2012.
A Patient Forum is more than just a single event or one moment in time. It is an opportunity to launch a patient advocacy movement working towards major improvements in cancer patient care in a country. The Patient Empowerment Initiative will contribute to efforts to address the burden of cancer in an individual country at a national level. But we believe that as multiple countries engage in Patient Empowerment Initiatives, it is anticipated that an international patient advocacy movement will emerge, which could change the game for how cancer is fought globally.