Whatever research or project you want to set up, peer experts always add value. How does the cooperation with these experts by experience take shape?
Participation is a matter of customisation. The form for optimal participation differs per research or project. Research aimed at the healthcare practice, for instance, requires a different contribution from peer experts than projects aimed at living with a disease or disability.
When it comes to fundamental research, people often ask whether participation of peer experts can add anything useful at all. Our answer is a resounding 'yes'. ZonMw has many examples of that. Participation in fundamental research has led to discoveries of new genes and breakthroughs in the development of new medicines and treatment methods.
There is no blueprint for succesful participation, but fortunately there are some keys to success. For example, early involvement of peer experts is important. Preferably, parties will start talking to each other from the moment they start thinking about what kind of research is needed.
After all, ideas that originate from the target group give the most confidence that there is a real need for the research project. If the research goal has been determined, the input of experts by experience will sharpen the main question and/or create room for additional questions.
Early involvement also encourages researchers to formulate their questions as clearly as possible from the outset of the project. Only in this way can they properly communicate their ideas and plans to peer experts.
When the research question comes from the target group, peer experts are 'on board' right away. But unfortunately, this is not (yet) always the case. To determine which group of peer experts are suitable for your project, it is important to map out who has a stake in the subject of your project.
In determening who your target group consists of, it helps to be as specific as possible. For example, does it concern people with a different cultural background, people with disabilities, elderly people or young people? A clear description will make it easier to find (representatives of) these stakeholders.
Contact patient organisations and ask for their help. Sometimes participants are closer than you would expect, for example in the waiting room at the doctor's office, or the community centre around the corner. Be creative in your search!
In addition to experts in the field of (living with) an illness or disability, there are more stakeholders who can increase the impact of a project. Think for instance of managers and professionals working in the field of healthcare and welfare, municipal officials or the business community. Educational institutes for healthcare professionals can also be very a interesting cooperation partner, since the knowledge you're going to develop has to reach them as well in order to be effective.
Involving peer experts in research can be done in different ways. It can be one group of stakeholders or several. Also, the roles of those experiental experts can vary from relatively passive to very intensive. The participation ladder shows this:
Co-production: most far-reaching form, peer expert acts as an equal research partner
Testing/assessing: together with other parties, the peer expert has the binding role of assessor
Advising: peer expert gives advice, but does not make decisions
Generating ideas: peer expert thinks along, opinion counts when determining research agenda, research question and set-up
Identifying needs/experiences: peer expert as a source of information
With this ladder, the rule is not: the higher, the better. The important thing is that the form of participation matches the research question and the phase of the research. In different phases of research, other forms of participation may be possible.
This can be seen in the so-called Involvement Matrix. When setting up the research or project, the matrix can be helpful in determining which roles are appropriate in which phase. On the website of the Kenniscentrum Revalidatiegeneeskunde Utrecht, you can read more about the Involvement Matrix.
'An experiential expert can have many different roles; you can ask someone to act as an advisor or as a partner, or peer experts can really take the lead. The roles can also differ per phase. We found out that we did not always make agreements about this subject. So we created a tool: the Involvement Matrix. It's ment to help you think about what role someone would like to play in which phase. (...) In this way, you can get the mutual expectations clear with each other, to prevent that people have expectations of others that they can not fulfil.'
Marjolijn Ketelaar, Senior Researcher Child Rehabilitation, UMC Utrechtand De Hoogstraat Revalidatie
'As a co-researcher, I am involved in every phase of the project 'Working Together, Learning Together' ('Samen werken, samen leren'). But that doesn't mean that everyone can do or should do the same as I do. It doesn't make you a better co-researcher. (...) Everyone has different abilities and is different in what they want to contribute. You don't have to participate in every phase and to do the same things in order to be a good co-researcher.
It is very important that co-researchers with peer expertise really add value to the research, and not just participatie because it looks good. Therefore it's important to look at what kind of role peer experts can play within a project.
Henriëtte Sandvoort, co-researcher 'Working together Learning together'
'I propose that we lay that participation ladder down on the floor, so you can easily move from one role to another. Because I've noticed that sometimes, people want to take a step back from time to time, and later take a step forward again. We have to give people the space to try things out and give them the chance to step in and out at any time. Some people have the need to feel that they have the space to do such things, without it giving a feeling of failure, or a loss of face. Because that's exactly what people do not need. (...) A flat ladder fits that image better.'
Sofie Sergeant, researcher Disability Studies in the Netherlands, project leader Working Together, Learning Together
'It's important to me that people can participate at their own pace, at their own level, and with proper support. And that they are seen for who they are. Because for me, participation really means taking part in a process. And not just sitting there for show.'
Ellis Jongerius, peer expert with a mild intellectual disability
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