238644 Power of the cancer patient voice: Adapting a patient- centered advocacy model for use in LMICs

Monday, October 31, 2011

Rebekkah Schear, MIA , Global Mission, LIVESTRONG (Lance Armstrong Foundation), Austin, TX
Kiti Kajana, MPH , Global Health, American Cancer Society, New York, NY
Cancer is the number one killer in the world. LMICs are disproportionately affected, seeing 70% of cancer deaths annually but receiving only 5% of resources. Yet less than 50 countries globally have prepared national cancer control plans. In many, there are significant breakages in healthcare systems of knowledge, services, and policy.

Patients' voices are a powerful tool for elucidating what must be addressed within a healthcare system. Inspired by the European patient forums supported by UICC beginning in 1998, our objective was to empower patients to become cancer control advocates in LMICs by adapting UICC's model. LIVESTRONG/American Cancer Society identified a means to build capacity of organizations in LMICs ripe for major advocacy activity through focused training on implementing a patient forum/supporting a national call to action. The initiative would leverage patient voices, bringing visibility to gaps in cancer control and highlighting the need for cancer to be a stronger priority on a country's agenda.

Over five months, we created a two-day patient advocacy/ leadership training and piloted it to 38 participants in South Africa with our local NGO partner. We ascertained advocacy knowledge and assessed confidence in communicating personal cancer experience and engaging media. Technical support has continued since May.

Results illustrate: increase of 59% in confidence in abilities; the model breeds sustained collaboration among competing NGOs; a national call to action will be issued in 2011 in South Africa.

With replication, it's anticipated that an international patient advocacy movement will emerge, contributing towards making cancer an international priority.

Learning Areas:
Advocacy for health and health education
Planning of health education strategies, interventions, and programs

Learning Objectives:
By the end of this presentation, participants will be able to: - Describe the cancer burden in low and middle-income countries (LMICs) - Explain the Patient Empowerment Model for affecting meaningful change in cancer policy by empowering patients to become cancer control advocates - Discuss the long-term potential of this model to launch an international patient advocacy movement, contributing to efforts to make cancer an international priority

Keywords: Cancer, Advocacy

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I oversee the design, implementation, and evaluation of global programs of LIVESTRONG, including the international intervention combating cancer stigma in low and middle income countries; advocacy, and awareness programs working to empower cancer survivors and elevate the priority accorded to cancer in the international health arena.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.