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

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.