Patient and public involvement in a cancer prevention research department: lessons learned from the DIADEME group
Year: 2026
Type: article
Abstract: Although public and patient involvement (PPI) is increasingly promoted in health research, its practical implementation remains rarely documented, especially in primary cancer prevention. The DIADEME group, aimed to address this gap through an empirical descriptive and process‑evaluation study reporting how citizens and patients involvement in research, governance, and preventive actions is organised and performed within the Department of Prevention Cancer Environment of a French Comprehensive Cancer Care Center (Centre Léon Bérard, Lyon). Citizens and patients with prior experience in PPI were recruited through associations, partners, flyers, to form a PPI resource group. A group manager coordinated the initiative, and a patient facilitator provided independent feedback on PPI to ensure balanced collaboration. The engagement framework (mission statement, engagement charter, and annual action plan) was co-developed during the first two meetings. PPI was evaluated using the Patient and Public Engagement Evaluation Tool framework and qualitative feedback. Five patients and five citizens were recruited as PPI resource group members, with associations being the most effective recruitment channel. Their contribution to 9 monthly meetings and additional tasks led to tangible outcomes: revisions to a colorectal cancer prevention study to better address patient needs, the development of an educational card game for Human Papillomavirus prevention, and updates of public information sheets on a public information portal. The patient facilitator had a critical role in improving meetings dynamic enabling more time for participant contributions. The PPI evaluation generated practical recommendations to improve group management, communication workflows, and impact tracking. The DIADEME group demonstrates that involving patients and citizens in cancer prevention research and communication activities is both feasible and valuable, though integration into governance remains challenging. This study provides lessons learned on structuring participatory processes that may support other teams and organisations implementing PPI initiatives in cancer prevention and beyond. Patients and members of the public can improve cancer prevention. Their experiential knowledge and understanding of health issues, derived from living with a disease or experience with cancer risk factors and prevention environments, provide valuable insights for research and prevention activities. But many teams still do not explain how they involve people in their team or project. The DIADEME group looked at how patients and citizens took part in a prevention department at a cancer centre in Lyon, France. The aim was to involve them in research, communication, and decisions about prevention in the department. Five patients and five citizens joined a group that worked with the prevention team. Community organisations, partners, and flyers helped us reach them. A group manager guided the work. A patient facilitator supported the group by ensuring and facilitating the participation of all patients and citizens. In the first meetings, the group wrote a shared mission, a charter, and a plan for the year. Over nine months, the group met monthly and took part in several tasks. They improved a study on colorectal cancer prevention based on their experience. They helped create an educational card game about a virus that can cause cancer. They also helped update public information sheets on a national health website. This work showed the feasibility of involving patients and citizens in a cancer prevention department. This is both possible and helpful. It led to many ideas to improve how to plan, communicate, and follow the impact of PPI. This may help other teams and organisations support citizen and patient involvement.
Authors: Pauline Oustric, Alice Moyne, Chloé Moulin, Myriam Sève, Corinne Brisbart, Jean-Maurice Thomas, Arnaud Treynet, Eva Corzani, Hélène Gerbal, Nicole Robert, Valérie Bernier, Chafi Chafizadeh, Chiraz Meziani, Carole Metral, Margaux Rozenberg, Emeline Girard, Hélène Astrugue, Charlotte Bruneau, Baptiste Fournier, Shérazade Maazaoui, Rodolf Mongondry, Nora Moumjid, Clémence Bouffay, Olivia Perol, Anne Claire Cadoré, Julien Biaudet, Béatrice Fervers
Institutions: Centre Léon Bérard, Lyon 1 Université, Parcours santé systémique
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,590
OpenAlex ID: W7225622082