Patient engagement in research is an approach that involves meaningful and active collaboration with patients in the governance, priority setting, conducting and knowledge translation of research. While patient engagement is becoming increasingly popular and vital prerequisite in research projects, many researchers are still unsure or hesitant in the involvement of patients in their work and why such engagement is of value. The process is unclear to many and how to fully involve patients can be unclear. However, many patients are keen to be part of research – “nothing about us without us” –arguing that no research can be fully done without direct insight from the people actually living with these conditions every day.
For some time now, the European Commission, through its research programmes and related initiatives, has been increasing its encouragement of involving patients in research, particularly within the projects it funds.
However, most patients and patient representatives still feel like not enough support is given to have their voices fully heard in research—requests and demand for involving patients is growing but a pool of “patient experts” is still lacking. The discussion needs to shift from “we need to show that patients are on board” to “how can we best involve patients and why/how are we involving them to the full benefit for the research conducted”. “What can be done concretely in EU funded health research projects to enforce patient engagement”? This needs to be more than a “box ticking exercise”.
This Brain Awareness Week looks to explore the current state of patient engagement in EU-funded Brain Research projects, looking at IMI and MULTI-ACT as concrete examples and solutions and analysing in discussion with key officials what has been done and what can still be done in order to guarantee change.