Stakeholder Engagement in Biomedical Research

Involving patients and further actors (stakeholders) as partners in the planning, conduction and evaluation of biomedical research projects has been recognized as issue of high importance on the international level. Many countries have founded institutions (like INVOLVE in the UK, PCORI in the US and SPOR in Canada) that explicitly fund and promote stakeholder engagement. The benefit of involving stakeholders can be seen in presumably increased relevance and quality of research projects. In addition, stakeholder participation/empowerment is also seen as having intrinsic value.

Despite stakeholder engagement becoming increasingly established and funded internationally, many conceptual questions remain unanswered. Examples would be: Which methods for engagement serve which goals of engagement best? How are participants of involvement activities chosen from the pool of relevant stakeholders? Which conflicts of interest become relevant in engagement activities and how can they be effectively managed? How do we understand quality in this context and how can we evaluate the quality of involvement activities? These and further conceptual issues and connected normative questions are to be answered as part of the research project. In addition, an analysis of the status quo of stakeholder engagement in Germany will be conducted. It will provide an overview of relevant actors, projects and policies in this context. Based on the conceptual work and the status quo analysis the project will formulate practice-oriented recommendations for the implementation of future stakeholder activities. These recommendations will be developed in collaboration with relevant stakeholders. The project thereby concentrates on the German context.