Considering Research Teams as Small Social Networks Instead of Hierarchical Structures: Workshop on Stakeholders’ Participation in Science

In health research, the participation of stakeholders – such as resource patients and families as well as community leaders – is becoming a norm expected to be met, from proposals to publication. But how to reach genuine participation without falling into tokenism or creating frustration and communication problems? In the past years, we have experienced many ways to collaborate with non-scientific team members who bring their precious experiential knowledge to research projects. This workshop is based on the recently launched HECO Network involving patients, parents, clinicians, and community leaders in a project aiming at finding innovative ideas to optimize tools and procedures used for the recruitment and support of participants in clinical research trials in pediatric oncology. We will share a step-by-step strategy and tools used for recruitment, orientation, training and supervision, as well as quality and performance control of collaborative activities in our small research network. The items used for the workshop are based on published works, and we will show how we adapted them for this specific project to help participants understand how they could mobilize our approach in their projects.

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