LIVESTRONG Patient Empowerment Initiative


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The Patient Empowerment Initiative: Empowering Patients to Change Cancer Policy Around the World. Visit for more information.

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  • Pilot project we initiatied in 2009 with partner ACSInitiative inspired by Cancer Patient Forums that the UICC has supported Happening for over 10 yearsMost led by cancer NGOsIn each country, one organization, or a coalition of organizations worked together to plan and implement the ForumSuccessful Forums occurred in France, Turkey, Italy, US, Portugal, Chile, Malaysia, South Africa
  • Leverages the patient voice to bring visibility to gaps in cancer control- provides a human faceto data and statistics
  • Our model includes series of trainings to empower local lead NGO to build a coalition of organizations to work collaboratively to plan and host a forum; instructor led (in person trainings) and online trainings when the technological capacity exists- covers a variety of topics- 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, storytelling training (public speaking), + Technical assistance through the process of forum planning (over a year)
  • What is a patient forum?Stakeholder meeting addressing a broad range of quality of life and survivorship issues Brings together cancer patients, media, NGOs, advocates, and representatives from the health sector and governmentAllows for open communication, placing the patient testimony at the center of the discussion
  • What are objectives of a patient forum?Provide data and information about cancer to policymakers, media, and the publicIdentify successful policies, programs and gapsAdvocate for change and improvementCreate a dialogue between stakeholdersCreate awareness and visibility for cancer issuesListen to the needs of cancer patients, families and caregivers** Tailored to needs and interests of a country
  • Most important output- CALL TO ACTION, what sets this apart from similar models. Creation of a streamlined all to action, supported by key stakeholders with a sustaining effort to “see it through”
  • LIVESTRONG Patient Empowerment Initiative

    1. 1. What’s that Mission Initiative?“THE PATIENTEMPOWERMENT PROJECT”(PEP)
    2. 2. Source: Sepulveda, C. “National Cancer Control Programmes Capacity Assessment” Presentation, 2009The landscape of international cancer control
    3. 3. • 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 levelInitiative goals
    4. 4. InitiativeImplementation Changes in cancer policy, practice, care Sustained patient advocacy movement Launch of National Call to Action Patient Forum Training and capacity building of NGOs and patients
    5. 5. CAPE TOWN, MAY 2011
    6. 6. CAPE TOWN, MAY 2011
    7. 7. • 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 strategiesWhat can a Patient Forum achieve?
    8. 8. •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.Examples of Success of the Model, 2001-2011
    9. 9. 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.