Abstract

If citizens’ involvement is so important to achieve lasting impact with our research projects, why is it then so difficult to make it happen? Why is it important in the first place? And do we truly believe it is important? Or are we just checking boxes? What is our role in making this happen? Do we have a clear understanding of the why, how and when of citizens’ involvement?
These and other questions related to citizens’ involvement will be discussed during our presentation and tackled in the interaction with the audience. We want to make citizens’ involvement as concrete as possible with the help of the concept, know-how and best practices of patient involvement in medical research., Our objective is to subsequently trigger Research Managers and Administrators to use this concept and know-how to inspire and fortify their own role in making citizens’ involvement happen.

Background: One of the key lessons learned of the H2020 programme is that more citizens' involvement is needed to create more impact. EU's research and innovation has to relate more to the needs of citizens. In the new framework programme, Horizon Europe, this is translated into the EU’s missions and the open science policy, of which active engagement of society is an element.
Under H2020, public engagement was a component in the cross-cutting issues “Responsible Research and Innovation (RRI)”. Public engagement had to be built into projects to promote more societally relevant outcomes, provide input to influence the EU R&I policy agenda, and to support the development and implementation of these policies.
So, co-creating the future with citizens is not a new concept and was already a goal in former framework programmes. Why is it then, that we are still having such a hard time to truly co-create with citizens?
Showcasing the example of patient involvement in medical research may elucidate the challenges and opportunities at stake:
Patient involvement can be described as making use of the perspectives and experiences of patients, clients, carers, and/or their loved ones to improve the care they receive, or research and policy related to this. It is closely interrelated to citizens’ involvement in terms of letting the citizens take on an active role in the world of science. The range of benefits of patient involvement is vast and can affect the quality and translatability of medical research, as well as the experiences of researchers and patients. Still, the actual implementation of patients as active stakeholders during the different stages of research seems to be an obstacle for many researchers. When researchers and patients are made aware of practical considerations, how to solve communicative obstacles, and general know-hows, the experience and implementation of patient involvement in a research project can be greatly improved. By explaining these aspects and how this should be managed by a neutral facilitator in the concept of patient involvement, we will show how a project manager is able to steer patient involvement, and thus citizens’ involvement, in the right direction.