Patient involvement
in EUnetCCC
Patients, survivors and caregivers are essential partners in improving cancer care. Across EUnetCCC, their lived experience helps ensure that services, research, education and policy reflect the realities and priorities of the people they are designed to serve.
Get Involved- 234
- Partner organisations
- 31
- Countries Involved
- 9
- Work Packages
Get involved
Let's build patient-centred cancer care together
Meaningful patient involvement depends on collaboration. Whether you want to contribute to activities, share good practice, or simply learn more — we would love to hear from you.
This form welcomes:
- Patients, survivors and caregivers
- Patient advocates & patient organisations
- Healthcare professionals & researchers
- Policymakers & partner institutions
Why patient involvement matters
Lived experience is essential expertise
Cancer affects millions of people across Europe every year, and the number living with and beyond cancer keeps growing. Healthcare professionals, researchers and policymakers bring critical expertise — patients and survivors contribute something equally important.
Pathways in practice
Patients understand how cancer care pathways work in reality, where barriers exist, and what matters most through diagnosis, treatment, survivorship and long-term follow-up.
Better quality & relevance
Their perspectives can improve quality of care, patient experience, communication, service design and the relevance of research.
Patient-centred systems
Meaningful involvement is not an optional addition to cancer care — it is a key component of high-quality, patient-centred health systems.
Principles for meaningful involvement
Patient involvement within EUnetCCC is guided by shared principles that support meaningful, ethical and inclusive participation — applied across all Work Packages and activities of the Joint Action.
Early & sustained
Involvement throughout activities and decision-making processes.
Co-creation first
The preferred approach whenever it is feasible.
Diversity, equity & inclusion
Ensuring different voices and experiences are represented.
Transparency & integrity
Independence and integrity in all engagement activities.
Training & support
Appropriate training, mentoring and support for participants.
Accessible & flexible
Flexible participation formats, including hybrid approaches.
Fair recognition
Recognition and reimbursement where applicable.
Privacy & wellbeing
Respect for privacy and the principle of “do no harm”.
Continuous learning
Ongoing evaluation and improvement of how we involve people.
How it works across EUnetCCC
Involvement integrated at every level
Patient involvement is integrated throughout the Joint Action and contributes to multiple areas of work.
At the Joint Action level
Patients contribute to governance, strategic discussions, advisory activities and selected implementation initiatives. Their perspectives help inform decisions, priorities and project outputs.
At Cancer Centres & Core Networks
Involvement supports care pathway design, quality improvement, survivorship initiatives, patient-centred care and institutional development across Comprehensive Cancer Centres and Networks.
Beyond the Joint Action
EUnetCCC promotes documentation and dissemination of good practices, building a shared European knowledge base that can inform future discussions on patient-centred cancer care.
In practice across Work Packages
Many forms, one shared goal
Patient involvement takes different forms across the various Work Packages and activities of EUnetCCC. As the Joint Action progresses, this section will showcase examples, experiences and achievements from across the network.
- Participation in governance and advisory discussions.
- Input into quality improvement and patient-reported measures.
- Contributions to dissemination and communication.
- Involvement in discussions on research priorities and innovation.
- Contributions to patient-centred care initiatives.
- Support for survivorship and rehabilitation initiatives.
- Participation in Annual Meeting sessions and stakeholder dialogues.
Ways patients can contribute
Different levels for different needs
Not every activity requires the same level of involvement. The chosen level is defined transparently and communicated clearly, so roles and expectations are understood by all.
Co-creation
Patients actively contribute to shaping activities, outputs and decisions alongside professionals and other stakeholders.
Advisory involvement
Patients provide expertise, feedback and recommendations that help inform decisions and improve outcomes.
Consultation & review
Patients contribute perspectives through structured consultations, reviews or specific engagement activities.
Resources, tools & inspiration
Practical support for the whole network
Have a resource, framework or case study to share? We would love to add it to this growing collection.
This page serves as a hub for resources that support patient involvement across EUnetCCC and beyond. By sharing experiences and practical tools, we support continuous learning across the network. As the Joint Action progresses, resources will be published here for partners, centres and patient organisations to use, adapt and build upon.
What you'll find here
- Frameworks and guidance documents
- Tools and templates for patient engagement
- Training materials and learning resources
- Good practice examples from Cancer Centres
- Publications, reports and policy documents
- Case studies on successful co-creation
Tracking progress & impact
Turning principles into action
Through regular monitoring and evaluation, we track progress in implementing patient involvement across the Joint Action and participating cancer centres — supporting accountability, transparency and continuous improvement.
Structures established
Patient involvement structures set up across the network.
Representatives engaged
Participation of patient representatives in activities and governance.
Co-creation delivered
Implementation of co-creation initiatives in practice.
Knowledge shared
Guidance, case studies and good practices disseminated.