LIVESTRONG Patient Empowerment Initiative

“THE PATIENT EMPOWERMENT PROJECT” (PEP)

What’s that Mission Initiative?

Source: Sepulveda, C. “National Cancer Control Programmes Capacity Assessment” Presentation, 2009

The landscape of international cancer control

Initiative goals

• To empower patients to become cancer control advocates through focused training

• To prepare participating organizations to plan and host a Cancer Patient Forum

• To support a comprehensive, survivor-informed national call to action on cancer in a country through the Patient Forum

• To contribute to efforts to address the burden of cancer in a country at a national level

Training and capacity building of NGOs and patients

Patient Forum

Launch of National Call to Action

Sustained patient

advocacy movement

Changes in cancer policy,

practice, care

Initiative Implementation

CAPE TOWN, MAY 2011

CAPE TOWN, MAY 2011

What can a Patient Forum achieve?

• Improvement in quality of patient care

• Break down the social stigma associated with cancer

• Highlight social and economic issues

• Reveal cultural differences that may need to be actively addressed in a country

• Bring visibility to cancer in the public spotlight, reinforcing the priority accorded to cancer control strategies

Examples of Success of the Model, 2001-2011

• France: President Chirac publicly declares cancer one of his top three priorities

• Italy: Reduced disparities in cancer control countrywide

• Turkey: Cancer is on the national health agenda

• South Africa: a new alliance of cancer NGOs is established with a “seat” at the table with government. Government launches a new national cancer registry. Improved media coverage of cancer.

What do we know?

1. Patients and their families can help us learn what is working well in a health care system and what needs to be addressed.

2. Their voices are a powerful tool in advocating for improvements in attitudes, knowledge, practice, policy, systems, and services.

3. Patient Forums are an evidence-based, adaptable and replicable model for empowering patients to share their stories and affect systemic change, over time.

4. This requires a systematic process for training patients and NGOs on the advocacy process and on how to hold a forum and launch a call to action.

5. As multiple countries engage in Patient Empowerment Initiatives, it is anticipated that an international cancer patient advocacy movement will emerge.