Involving peer experts in research has many benefits. It results in usable and relevant results from medical research for the target group. Or successful projects that improve the quality of life of people with a disease or disability.
Rheumatoid arthritis patients who are able to get the topic 'fatigue' on a research agenda. Patients co-writing a guideline for reduced fertility. A wiki set up by parents that leads to research that identifies the gene that causes their son's rare disease. These are just a few of the results of participation of peer experts in medical research.
Besides medical research, ZonMw focuses on projects that give people with a disease or disability as much control as possible over their own lives. One such project might lead to the creation of a toolbox for young people with a chronic illness. Or a method to help elderly people with dementia experience more support from their surroundings.
The aim of these kinds of projects is to provide knowledge and resources to increase the control over their own lives. In the realisation and implementation of these projects, it is only logical that the experience of the people involved is indispensable. Only then will the results of these projects really improve their lives. And that is what we are doing it for, isn't it?
What others say about paticipation
'The core idea of participation is that we all have valuable knowledge. So the policy maker, but also children, young people, the elderly, people with a disability or illness: everyone. For policies to work and interventions to be successful, it is necessary to do justice to everyone's knowledge and expertise. That means not only listening, but above all working together. For me, participation is not a method, but a value that says something about how we relate to each other. Only in this way can policies and interventions be developed that match the complex reality of people.
Christine Dedding, Associate Professor at the Amsterdam UMC, specialising in participation and co-creation
'If you involve peer experts, uou're not only going to get richer research materials and a richer process, but you're also going to present people in a society as having something to say, so you're also doing something in society. So it's going to be on an individual level, a team level, a research level and beyond. But that is only if many conditions are met. And if you say: 'No, we don't have time. Or no, I like quiet research, then please don't work with experts by experience. Because then you are doing these people a great disservice.'
Sofie Sergeant, researcher Disability Studies in the Netherlands / project leader Working Together, Learning Together
'As experts by expertise, we really know what it's all about. For example, my social psychiatric nurse once said, "I've had thirty years of experience but I've never experienced it and I'll never really understand what it's like to go through a psychosis." (...) I think researchers know and read a lot. But I think that if you put a group of people who are part of the group that you read about, who all struggle with diagnoses and symptoms, if you put them together and see what happens, then suddenly the theory becomes very much alive. Scientists learn a lot from that.
Tim Knoote, member of the KOPLOPERS research team on participation of young people with mental health disabilities
'What participation can bring is that someone has a lot of practical knowledge, the real experience. They really experience at first hand what it is like to live with a disability or illness. And the professional branch of care can benefit a lot from this. So you get the real, pure experiences of the people themselves. And that way, together, you can improve the care and the problems that people have to deal with.'
Ellis Jongerius, experience expert in LVB, member of theklankbordgroep Gewoon Bijzonder
'When a group of people examine an elephant wearing a blindfold, everyone feels something different. But when the information is shared, at a certain point it is clear that it is an elephant. The expert sees a piece that you, as a scientist, will never see. So you need them, just like the professionals. Otherwise you'll never get a complete and reliable picture.'
Jeanet Landsman, project leader Sensation of a Good Life
No fixed recipe
Cooperation with experts by experience in the broadest sense of the word is becoming more and more self-evident because of the positive effects. Still, there is no fixed recipe for successful participation. In every project or research, space is needed to discover what does or does not work. All parties must be involved from start to finish as equal partners. With these pages ZonMw wants to give all parties involved tools for this.
What is participation?
Participation is all about working together with stakeholders in research and practice projects, with the aim of increasing knowledge, new insights and innovation. This applies not only to health care, but also to issues related to living with a disease or disability. The starting point is that everyone's knowledge is of value.
The contributions of experts by experience to issues involving (living with) illness and health are an important addition to the scientific approach. By giving a voice to those affected, this way of research can also have an emancipating aspect.
Who participates and what do they contribute?
When people hear the term 'participation', they often only think of patients. And yes, that is certainly an important group. After all, healthcare revolves around patients. They not only have a great deal of specific knowledge about the condition itself, but also about how they live (or survive) with it - in all facets of their lives.
But participation is about involving and collaborating with many more stakeholders. This may include anyone who has a valuable vision of the practice based on their experience. For instance, informal carers, young people, representatives of care and welfare institutions, the elderly, professionals and teachers.
Experts by experience can, based on their own needs, put new research themes on the map. They can (co)formulate or sharpen the research question. They can also provide insight into the feasibility of a practice project or research.
What does this mean for applicants?
The term 'applicant' for projects usually refers to scientists or research institutes. In practice, this is (still) often the case. But patient organisations, healthcare institutions or professionals can also apply for funding.
Whoever applies, it must be clear to ZonMw that within the project or research close collaboration takes place with various relevant groups. We also want to see details of how this is done. In this way, together we come to results that are stronger, more reliable and more relevant to practice.
Everyone's knowledge is of value. That is the starting point of participation. But how do you reach that knowledge? And how does participation benefit researchers, peer experts and society as a whole? We asked Christine Dedding.
Frans Spierings is a researcher at Koplopers, a project that aims to make mental health problems among young people easier to talk about. From start to finish, peer experts are involved as co-researchers. In a personal column, he shares his vision on participatory research.