Experiential experts have many ways to contribute. As a member of a panel or feedback group or initiator of a project. Whatever you do, do something that does justice to your own knowledge and capacity.
As an peer expert or member of a patient organisation, there are many good reasons to contribute to research. From helping to determine which question to address in the first place, to actually including your own perspective in the research itself and thinking about how to use the results.
Participation in research ensures that the results can be spread better and have an impact in daily practice. Finally, participation ensures that the group participating in the research is treated with care.
According to many peer experts and researchers, emancipation of the target group is a side effect of participatory research. Participants feel heard and seen. As a result, they discover more of their own strength and knowledge.
'For me it feels very good to do my share. Professionals can think up a lot of things and that's a good thing. But if you don't ask the target group how things work in real life, the solution won't always fit. Then it remains someone else's idea. But by sharing your idea with me and working together, it becomes our idea. I strive for everyone to be able to participate.'
Ellis Jongerius, experiential expert with a mild intellectual disability
'In a project, we worked with young people with cerebral palsy (brain damage). They were so involved that in no time - before we even realised - they had built a website. With information for other young people with cerebral palsy (CP). With numerous tips and tricks and summaries from the research. Because they thought it was so important that other young people with CP also received these tips. They indicated that they felt so encouraged by their participation that they had simply started to implement these ideas. So it also benefits the experts themselves.'
Marjolein Ketelaar, Senior Researcher Child Rehabilitation, UMC Utrecht and De Hoogstraat Rehabilitation
'Participation is very important when it comes to a topic like mental illnesses among young people. There is a stigma surrounding this subject and that makes people unequal. People with mental health issues are not taken seriously and are not seen as fullblown people. And that means that as a researcher you also have a task in making sure that the voices of the young people who are struggling with this are heard. Otherwise, you leave the status quo as it is. By giving young people a voice, you actually help them fight against this injustice.'
Frans Spierings, lector on growing up in the city, Rotterdam University of Applied Sciences
'When you hear a story about psychosis from someone's own experience, you realise that there may also be a positive aspect to the symptoms of the illness. Because hallucinations are not by definition a very negative experience. A psychosis is not all bad. And that's what I hope to convey with this project. That a crisis or transformation can also be something beautiful. That in the end it can make you stronger. I think that is important to convey and I hope to continue to do so after this project.'
Tim Knoote, member of the youth team KOPLOPERS, research into the participation of young people with mental health problems
Peer experts can play different roles within research projects. From someone who mainly informs or advises to co-researcher to being the initiator of a research or project. Membership of a feedback group or programme committee is also an option.
Whatever your role is, make sure that there's enough attention for the way participation takes shape. This way, you can assess whether your role is appropriate and whether you have enough time and energy to meet expectations.
During the project, also keep a close eye on the way everyone collaborates and let people know if you have any questions - or limitations. This may not always be easy, but it is important. The people involved can only learn from it.
Another possibility for participation is membership of a panel that assesses studies for relevance. Experiential experts, guided by a discussion leader, give their opinion on a (research) proposal.
The panel answers questions such as: is the subject relevant to the target group? Are the results of the research of any use to them? Are peer experts involved? Is the research design not too demanding for the participants?
Are you a member of a expert panel? Do you wonder how to make sure that esearchers actually do something with feedback on research proposals? Three tips:
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