At the International Cancer Patient Coalition (ICPC), we recognize that the challenges faced by cancer patients and those at risk of cancer transcend borders and require a unified, global response. To ensure our advocacy remains relevant, practical, and inclusive, we are establishing a Global Patient Advisory Network. This network will work closely with patient advocacy groups (PAGs), cancer associations, individual patient advocates, citizens at risk of cancer—such as those with a family history of the disease—and innovators in cancer care to gather insights, foster shared solutions, and ensure that diverse voices are at the heart of our efforts. Together, we aim to champion early detection, timely diagnosis, equitable access to care, and the effective use of data, empowering individuals to live fulfilling lives despite the challenges they face. As we know, time is not on our side.
Rather than appointing a formal board for this initiative, ICPC is committed to fostering collaboration and inclusivity by drawing on the collective wisdom of patients, at-risk citizens, advocates, coalitions, global innovators, and policymakers. This approach ensures diverse perspectives and reinforces the interconnectedness of our mission. With 1 in 3 individuals facing a cancer diagnosis, we are all just one diagnosis away from being patients ourselves.
Governance Structure: Ensuring Patient Voices Shape Decision-Making
To ensure that the Global Patient Advisory Network remains closely aligned with ICPC’s mission and strategic goals, we have established a robust governance structure that fosters regular communication and active representation between the Network and the ICPC Board. This structure ensures that patient voices are integrated into decision-making at the highest levels.
- Patient Advisory Representative on the ICPC Board:
- A representative from the Global Patient Advisory Network will serve as a full member of the ICPC Board, ensuring that patient perspectives are directly represented in strategic discussions and decisions.
- This representative will be elected by the Network’s members and will serve as a bridge between the Network and the Board, advocating for patient needs and priorities.
- Regular Communication Between the Network and the Board:
- The Global Patient Advisory Network will provide regular updates to the ICPC Board, sharing insights, challenges, and recommendations from patients, at-risk citizens, and advocacy groups.
- These updates will inform the Board’s decision-making processes and ensure that patient-centered solutions remain a core focus of ICPC’s work.
- Advisory Panels and Working Groups:
- The Network will establish advisory panels and working groups composed of patients, at-risk citizens, advocates, and experts to address specific issues, such as early detection, equitable access, and policy advocacy.
- These panels will report directly to the ICPC Board, providing actionable recommendations and ensuring that patient voices are heard at every stage of program development and implementation.
- Transparency and Accountability:
- The governance structure will prioritize transparency, with regular reports published on the Network’s activities, achievements, and impact.
- The ICPC Board will provide feedback to the Network, ensuring that patient input is not only heard but also acted upon.
How We Will Involve Patients, At-Risk Citizens, and Policymakers: A Structured Engagement Process
Drawing inspiration from the EMA Engagement Framework, the Global Patient Advisory Network will adopt a systematic and transparent approach to involving patients, at-risk citizens, policymakers, and their representatives. This process will ensure meaningful engagement at every stage of our work:
- Identifying Needs and Priorities:
- Collaborate with patient advocacy groups (PAGs), cancer associations, community organizations, genetic counseling networks, and government health agencies to identify the most pressing challenges faced by cancer patients and at-risk individuals.
- Conduct surveys, focus groups, and consultations to gather insights directly from patients, caregivers, and citizens with a family history of cancer.
- Building Partnerships with Diverse Stakeholders:
- Establish formal partnerships with PAGs, cancer prevention organizations, genetic counseling networks, research institutions, technology innovators, and government bodies to ensure their perspectives are integrated into our advocacy efforts.
- Provide training and resources to empower patients, advocates, and at-risk citizens to effectively represent their communities in policy discussions.
- Involving Patients, At-Risk Citizens, and Policymakers in Decision-Making:
- Create advisory panels composed of patients, caregivers, at-risk citizens, advocates, innovators, and policymakers to provide input on key initiatives and strategies.
- Ensure that patient and at-risk representatives are involved in the design, implementation, and evaluation of programs, alongside government and policy stakeholders.
- Amplifying Diverse Voices:
- Prioritize the inclusion of underrepresented populations, including those from low- and middle-income countries, ethnic minorities, marginalized communities, and individuals with a genetic predisposition to cancer.
- Use digital platforms, regional hubs, and innovative communication tools to ensure that every voice is heard, regardless of geographic location or current health status.
- Educating and Empowering Individuals:
- Develop educational materials, workshops, and digital tools to help patients and at-risk citizens understand their conditions, risk factors, prevention strategies, treatment options, and rights.
- Raise awareness about the importance of early detection, genetic testing, lifestyle modifications, and equitable access to care.
- Leveraging Innovation and Technology:
- Collaborate with technology innovators to develop digital tools, such as mobile apps and online platforms, that support patient education, early detection, and access to care.
- Explore the use of artificial intelligence (AI) and data analytics to identify trends, improve outcomes, and personalize care for patients and at-risk individuals.
- Engaging with Policymakers and Governments:
- Work closely with national and regional governments, health ministries, and regulatory agencies to align patient advocacy efforts with policy development and healthcare reforms.
- Advocate for policies that prioritize early detection, equitable access to care, affordable treatments, and patient-centered research.
- Provide evidence-based recommendations to policymakers, drawing on insights from patients, at-risk citizens, and advocacy groups.
- Ensuring Transparency and Accountability:
- Regularly communicate with stakeholders about the progress and impact of the Global Patient Advisory Network.
- Publish reports and updates to demonstrate how input from patients, at-risk citizens, advocates, and policymakers has shaped our initiatives.
- Establish measurable goals and key performance indicators (KPIs) to track the success of the network and ensure continuous improvement.
- Promoting Sustainability and Scalability:
- Design programs and initiatives that are sustainable and adaptable to different regions and healthcare systems.
- Foster partnerships with global organizations, governments, and private sector stakeholders to ensure long-term funding and support for the network.
Our Commitment to Collaboration and Inclusivity
By adopting a structured and transparent approach to engagement, the Global Patient Advisory Network will ensure that the needs and priorities of patients, at-risk citizens, and their communities are at the forefront of our work. Drawing on the principles of the EMA Engagement Framework, we will foster meaningful collaboration with PAGs, cancer prevention organizations, genetic counseling networks, innovators in cancer care, and policymakers, amplifying diverse voices and empowering individuals to actively participate in shaping the future of cancer care.
Our motto, “Many cancers, many places but one patient,” reflects our shared commitment to supporting patients, at-risk citizens, and their families in living their best lives. Through collaboration, inclusivity, innovation, and a relentless focus on patient- and prevention-centered solutions, we are united in advocating for a brighter future for all.
