For scientists, it's demanding to shape and carry out the participation process properly. It takes time, energy and an open mind. Because there is no blueprint, there is also uncertainty.

Scientists who take participation seriously in their project need to have quite some skills. Setting up participatory research well, for instance, requires knowledge of the body of thought. Why is participation important and what does it offer researchers and peer experts?

Equality and a sincere trust in the value of the other person's knowledge are of great importance in this respect. A scientist must also have insight into the various roles that peer experts can take on and the appropriate working methods.

Participation demands something from researchers

In addition, participation requires thinking outside the box. Research and projects, for example, are often set up verbally. Think of how many times people use questionnaires, discussion meetings and interviews. Realise that these methods are not always suitable for everyone. Non-verbal research methods can ensure that other sources of knowledge are tapped into.

It's also important for scientists to get involved in the research field from an early stage. Firstly, they have to work together with the target group to formulate a relevant research question together. And secondly, they have to understand the context of real life. In other words: less conference rooms, more outward exposure.

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' Participation based on equality is not something you can just do without putting effort in it. You really have to be that way as a person. And be curious about all those stories and all those perspectives. You can learn that, but it also has to be in you. What helps me is that I, as a mother, am a experiential expert myself. I take that with me and mention it when necessary. I am not the type to sit endlessly at the computer looking for data. I am a researcher that likes to work hands-on.'

Jeanet Landsman, project leader Sensation of a Good Life

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'Researchers are not trained to deal with discomfort. They are trained to follow a structure and not to deal with emotion, with change. Flexibility is also not necessarily appreciated or sought after. Dealing with that starts with appreciating or knowing that discomfort is important, because that is where understanding and new knowledge actually originate. Without disruption, nothing beautiful can ever come about. So you need it. And we can offer comfort to researchers by saying that discomfort is part of participation.'

Christine Dedding, Associate Professor Amsterdam UMC, specialisation participation/co-creation

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'It's OK to struggle, it's OK to not know it all. I think we have to acknowledge that. Some collaborations, with people who can't speak or can't be present for long, are just difficult. There is pressure to perform, there is little time, and you have to keep promises to the organizations funding your research. That is just difficult. But those aren't good reasons to quit with participation. If we start with aknowledging that participation is difficult, and start aknowledging that difficult is very interesting and that we are allowed to struggle and fumble and fail... Then nothing can go wrong.'

Sofie Sergeant, researcher Disability Studies, project leader 'Working together, learning together'

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'I see a lot of focus groups. But if you invite experiential experts to a focus group, you invite people into your system, which is comfortable for researchers and institutes. Also, those few people never represent the required diversity. They are often highly educated and feel comfortable within the system we have learned to work in. These are not the people that matter.'

Christine Dedding, Associate Professor Amsterdam UMC, specialisation participation/co-creation

Participation, even if it's not that obvious

In research aimed at the healthcare practice and translational research, scientists quickly see the benefit of participation. The same applies to clinical research aimed at improving knowledge of diseases, developing diagnostic methods and new treatments or medical devices. But in the case of fundamental research, aimed at knowing things, the usefulness of participation is questioned.

Nevertheless, ZonMw also has good examples of participation in this type of research. Collaboration with peer experts - usually patients or their relatives - has already led to the discovery of new genes, new descriptions of diagnostics and breakthroughs in the development of new medicines and treatment methods.

The power of participation can lie in organising one's own (patient) group, collecting biological material and/or data in biobanks or monitoring the burden that peers experience by participating in research. They can also play a role in providing information about research and (living with) an illness to a wider audience.

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'An example of how you can share your research results with a broader audience together with peer experts is a film we made. In it, two Alzheimer's patients are filmed. And what they show in that film is actually an illustration of the story we explain about what happens at molecular and cellular level in the brains of the patients. That reinforces the message.'

Wiep Scheper, Associate Professor, Department of Clinical Genetics, Amsterdam UMC

'They often knew the literature even better than we did. I was a real lab rat. Suddenly I saw that, as a scientist, you could also talk directly to patients about research'.'

(Source: Basic research and patient organisations: a surprising combination - only available in Dutch)

Stay realistic

It may seem obvious, but it is worth emphasising: take the abilities of the participants into account. Chronically ill people may not be able to participate in a session for too long. A location must be accessible for people with a physical disability. Do not base these choices on assumptions, but take the time to discuss these issues with each other.

The same applies to issues such as attendance fees and travel expenses. In order to achieve a good way of collaborating, it may be useful to speak to the various parties involved separately first. After that, ways of working together can be developed. Again, take your time. This investment will certainly pay off as the process progresses.

Keep learning

Participation requires skills of researchers that do not (yet) always get the same attention in a scientific learning environment. For example, a greater demand is made on creativity and flexibility, and the time schedule cannot always be accurately predicted.

This is a good reason to check in advance what kind of knowledge already is available or whether additional support might be needed. This can be done by talking to colleagues who have more experience in setting up participatory research.

© ZonMw, 2020

Author Marieke Kessel Photography Shutterstock

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