In the research world, everybody now knows that good research goes hand-in-hand with the input of peer experts. But how can that participation best be realised? We asked Christine Dedding who, as Associate Professor at Amsterdam UMC, is specialised in participation and co-creation. ‘We need to go and discover and shape things together.'

Let’s start with the basics. What is participation?

‘The core idea of participation is that we all possess valuable knowledge. The policymaker, but also children, young people, the elderly, people with a disability or illness, everybody. You can only produce policies that work and interventions that are effective if you do justice to everybody’s knowledge and expertise. That means not only listening carefully, but especially working together too. As far as I’m concerned, participation is not a method, but a value that says something about how we relate to each other.’

What does that yield?

‘Policy and interventions that connect with the complex reality of people. I get irritated by sentences like: “they’re not motivated” or “they can’t do it”. We often hear that from people behind desks in institutes. It is far too easy for policymakers, advisers or researchers to talk about people in this way. However, that does not do justice to the knowledge and expertise of the people concerned. Such a view of reality is far too limited to be able to develop good policy.

An example. I’m working together with colleagues in a project about digital inequality. This concerns people affected by poverty who are struggling to find their way in the digital world. Our Pavlovian response to this is: we must train these people. But if you take the time to carefully study the complex living environment of those people, you’ll see that this is not a solution. A lack of money means pressure and stress.

Portrait of a woman
Portrait of Christine Dedding. Photography: Marieke Kessel

How are you going to pay for the groceries? How are you going to buy those long wanted shoes for your son? On Monday there is language training, on Tuesday debt counselling and then on Wednesday yet another training to improve your digital skills? With all of those financial worries on their minds, of course people don’t have the time for that. You will only acquire new knowledge if you investigate together and learn together. That gives rise to policy that genuinely connects with people’s realities.’

But isn’t there far more attention for participation in research nowadays?

‘Yes, there certainly is. The philosophy has taken root and is encouraged by ZonMw, for example. That’s fantastic. But I sometimes wonder whether we’ve lost sight of the original goal of participation.

By doing justice to everybody’s knowledge and expertise, the founders of the philosophy wanted to realise positive changes in society. And then especially for the have-nots, therefore those people in vulnerable circumstances who are neither seen nor heard. Despite the attention for participation in research, that group is still heard too little.

'By doing justice to everybody’s knowledge and expertise, the founders of the philosophy wanted to realise positive changes in society.'

I mainly see a lot of focus groups. Then you invite people into your system, which is comfortable for researchers and institutes. Furthermore, the handful of people in such groups never represent the necessary diversity. They’re often well-educated and feel at ease within the system in which we have learned to work. Those are not the people we’re trying to help.’

So what should we be doing?

‘Less focus on making decisions over the heads of people and instead really meeting the people concerned and collaborating with them. Preferably in the living environment of the people we’re trying to help. That is where new knowledge arises, not in meeting rooms.

Therefore every project starts by examining who the people are that the research is investigating, what motivates them and what their needs are. First of all, we need to find those people, in a community centre or wherever else they may be found. Then you can get to know and trust each other, which costs time, and only then can you start to build something.’

And that is when the research question arises?

‘Ideally, yes. However, if the research question was already formulated from behind a researcher’s desk, then I hope that this happened in interaction with the people it concerns.’

How does participation acquire a concrete form in that research?

‘Yes, I often hear that question. My disappointing answer is always that I don’t really know. That is indeed the crux of the problem. Because you need to go and discover and shape things together. You cannot say: one size fits all. Even I begin by asking the same basic questions each time. Who is it about? What is needed here? And how can we help each other? It is an interactive process of building, thinking, reflecting and taking the next step.’

But are there keys for success?

‘Fortunately, yes. Invest in the meeting and avoid organising it in a formal setting. Go and cook or take a walk together, or do something else that is appropriate to the project. Be creative in the methods that you use. Participation all too often gains a verbal form. And with that, we unintentionally exclude a lot of people.

By asking questions, we do not always reach the deeper emotions. For example, work with photography or go and build with Lego. This is the only way other types of knowledge and emotion can emerge. By doing something together instead of just talking, a different type of conversation develops.’

What does that mean for the role of the researcher?

‘That role revolves far more around helpfulness in facilitating a learning process. You always participate as a researcher, of course. That means analysing what happens and thoroughly recording that.

'If you have spent time together and learned from each other, then implementation is a far more natural process.'

Furthermore, I not only publish in academic journals, but I also devise ways and tools for sharing knowledge in everyday practice. Only then will changes and improvements occur. If you have spent time together and learned from each other, then implementation is a far more natural process. Via the people with the experience and knowledge, it will end up where it needs to be.’

What does participation require from researchers?

‘Creativity. And if you’re not that creative, then involve other people who are. It requires flexibility. And because you do not always know who you will meet or what you will do, it also requires courage. Knowledge and expertise about the philosophy is also important. Because if you genuinely understand why participation is important then, in turn, you will gain more courage.

We have started the School for Participation (website in Dutch) to better explain participation and the underlying sources of knowledge. We also organise participation cafes. There researchers can present dilemmas so that they can together make progress in the learning process. Because it’s a process that can make you feel uncertain. After all, how do you do things if there’s no blueprint?’

How do you hope participation in research will develop further?

‘We need to keep on learning. ZonMw has done a really good job at boosting participation among researchers and project applicants. This phase has borne fruit, and everybody knows it is important and desirable. Now we need to critically examine who is involved and in particular: who is not involved. We also need to consider whether the ultimate objective of societal change for those who cannot easily provide input and be heard is firmly at the fore.

In the project I mentioned earlier about digital inequality we found, for example, that we need to make use of different systems. Because these citizens affected by poverty are busy with surviving and do not have time for yet another training. The professionals - who are paid to do this - must learn to design in such a way that these people can also make good use of what we offer. From this perspective, the question who lacks certain skills should not only be asked about users, but about the commissioning bodies and the designers of the research as well.’

So rethinking things?

‘Precisely. And that requires a joint learning process that starts with the meeting, there where people live.’

© ZonMw, 2020

Author and photography Marieke Kessel

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