The Patient Empowerment Project (PEP) aims to empower cancer patients to advocate for improvements in cancer control through focused training and hosting of Cancer Patient Forums. The goals are to prepare organizations to plan forums, support a national call to action on cancer, and contribute to national cancer burden efforts. Forums bring visibility to cancer issues and have led to policy changes in countries like France, Italy, Turkey, and South Africa. Patient voices are a powerful tool for advocating improvements through sharing stories and affecting long-term systemic change.
2. Source: Sepulveda, C. “National Cancer Control Programmes Capacity Assessment” Presentation, 2009
The landscape of international cancer control
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
level
Initiative goals
4. Initiative
Implementation
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
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
strategies
What can a Patient Forum achieve?
8.
9. •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
10. 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.
Notas del editor
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”