What is Stakeholder Engagement?
By stakeholder engagement in health research, we mean the active involvement of patients and other stakeholders in the research process. This does not include the inclusion of participants in studies, but rather that the research process is co-designed with the stakeholders. Involving patients and further stakeholders as partners in the planning, execution and evaluation of biomedical research projects has been recognized as an 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 in health research.
Involving stakeholders can increase the relevance and quality of research projects. Moreover, engagement and empowerment in health research also have an intrinsic value. There is also a growing interest among the population to be actively engaged in research processes: In the 2019 “Science Barometer” (“Wissenschaftsbarometer”), 49 percent stated that they would like to take part in projects as a co-researchers – in 2017, the figure was 40 percent.