What is Patient & Stakeholder Engagement?
Patient and stakeholder engagement in health research is defined as the active involvement of patients and other stakeholders in the research process. This does not mean including participants in studies as subjects, but it is about co-designing the research process with the stakeholders.
The involvement of patients and other stakeholders as partners in the planning, conduct, and evaluation of biomedical research projects has been recognized as an issue of high importance on the international level. In many countries, institutions have been founded (e.g., NIHR Centre for Engagement and Dissemination, which was initially called INVOLVE in the UK, PCORI in the US and SPOR in Canada), in which they explicitly fund the involvement of relevant stakeholders in the health research.
The benefit of stakeholder engagement should be, for example, the increasement of relevance and quality of research projects, which can also boost the translation into healthcare. Furthermore, engagement and empowerment in health research also have an intrinsic value.Additionally, there is also a growing interest among the population to engage actively in research processes: In the 2019 "Science Barometer" (Wissenschaftsbarometer), 49% answered that they would like to take an active role in a scientific research project – in 2017, it was 40%.
