Case Study: Amplifying Patient Voices for Global Impact in Cancer Research
The Challenge
Cancer patients hold invaluable expertise through their lived experiences, yet their voices often remain marginalised within research. Traditional approaches prioritise complex data and academic findings, leaving patients underrepresented in key processes. This results in research that can lack the nuance and patient-centred insights needed to drive meaningful change.
Key challenges included:
- Limited mechanisms for patient involvement in research design and dissemination.
- Minimal representation of patient voices at global conferences.
- Lack of formal recognition for patients’ contributions as partners in the research process.
Our Approach: An Ambitious, Inclusive Vision
Recognising the need for transformative change, the EORTC Quality of Life Group launched an ambitious, global initiative to bridge the gap between expert-driven research and the lived experiences of cancer patients. The project aims to create a replicable model that integrates diverse patient perspectives into every aspect of research and governance.
Key actions included:
- Comprehensive Needs Assessment:
- Conducted a global survey to gather insights from patients of all backgrounds. The survey explored:
- How patients wish to engage with research and organisational processes.
- Preferred communication methods and recognition mechanisms.
- Conducted a global survey to gather insights from patients of all backgrounds. The survey explored:
- Framework Development for Patient Integration:
- Designing strategies to systematically embed patient input into:
- Research design and priorities.
- Governance structures.
- Event planning and conference participation.
- Designing strategies to systematically embed patient input into:
- Empowering Conference Engagement:
- Initiated discussions to create pathways for patients to share their lived experiences alongside scientific findings at international forums.
- Recognition and Inclusion:
- Developing mechanisms for acknowledging patient contributions, such as co-authorship of research papers and formal roles within projects.
Global Impact: Anticipated Outcomes
- Organisational Transformation:
- By integrating patient perspectives into processes, EORTC is redefining research outputs to be more inclusive and patient-centred, aligning them with real-world needs.
- Empowering Patients:
- The initiative fosters a sense of agency and value among patients, positioning them as “experts by practice” in the global research community.
- Sector-Wide Influence:
- This project is set to establish a replicable, scalable model for patient engagement, serving as a benchmark for research organisations worldwide.
Organisational Transformation
Empowering Patients
Sector-Wide Influence
The Vision for the Future
This initiative represents more than just a step forward—it’s a paradigm shift in how cancer research integrates patient expertise on a global scale. By systematically embedding the voices of patients from diverse socio-economic and cultural backgrounds, the EORTC is creating a collaborative, inclusive research environment that prioritises patient needs and outcomes.
This groundbreaking initiative demonstrates the power of patient-centric research to reshape the global cancer research landscape, empowering patients and researchers alike to achieve more impactful, meaningful outcomes.