Participation requires attention throughout a project or research. By shaping this process together as much as possible, everyone's knowledge and experience comes forward.
It's clear that for succesful participation, one must structurally reserve time and space for it during a project. This is the only way participation really adds value. It also enables experiential experts to stay keen on whether the project is (still) in line with their daily practice. To shape participation well, it is worth making clear agreements on a few topics.
For example, it's important to formulate clear objectives and to link these to a planning for the various phases of the project. Agree on the roles and tasks of everyone, and on who is responsible for which input in each research phase. Like most people, peer experts like to know in advance what they can expect, like an invitation for a focus group or documents to comment on.
If a project takes a year or longer, it is advisable to discuss how the parties will keep each other informed, so that everyone stays involved. This can be done by planning regular meetings, sending newsletters or sharing and exchanging knowledge through social media. Also make time for evaluation moments.
Agree on learning from your collaboration. Getting to know each other and getting used to each other is not easy. Misunderstandings or things not going according to plan are part of the process. That's not a problem at all, as long as it's discussed openly. This creates learning moments that can only improve the further course of the project.
There are ways to support experiential experts in order to get their best possible contribution. For example, you can think of an introductory meeting or a buddy system, in which a beginning patient representative is linked to someone with more experience.
'What we've noticed is that you have to keep the groups within a project together as much as possible, in stead of splitting them up. So no separate meetings for the project team and the youth team (the peer experts), like we did in the beginning. This caused the paths of those teams to diverge somewhat. We eventually corrected this, but it did take three or four meetings to work on the same agenda together again. The agenda wasn't going to be the researchers' agenda, or the agenda of the young people. It had to be our agenda, and we had to support it together. (...) That took some effort, but in the end it worked.'
Frans Spierings, lector on growing up in the city, researcher at KOPLOPERS
'If you notice that sometimes things are not going well in the cooperation, then you have to talk to each other about it. That can be very painful. And confronting. But it's a good thing. Because it puts you on edge again. A good collaboration doesn't just happen by itself, absolutely not.'
Henriëtte Sandvoort, co-researcher 'Working together Learning together'
'In your collaboration, it's very important to be able to just observe it. What do you contribute, what am I contributing? That's not an easy thing to do. But it is very fascinating to look at things like that.'
Sofie Sergeant, researcher Disability Studies in the Netherlands, project leader 'Working together, Learning together'
Explore what the preconditions are that enable peer experts to participate optimally in the project. Think of easily accessible texts or sending information in print instead of only working digitally. ZonMw considers it self-evident that the time and effort put in by experiential experts should be financially rewarded. If a substantial investment of time is required, this could be an attendance fee or (if this is possible and desirable) hiring someone temporarily as a freelancer. Also, telephone-, travel- and parking costs can be reimbursed.
ZonMw projects often span several years. It is not always possible to keep the process of participation rewarding throughout the research. Or a project takes a different course than expected . In those cases, too, it is important to maintain the cooperative relationship. At the very least, keep the peer experts informed. By keeping in touch, new issues may come to light that others overlook.
Every year, we meet up with the participants of the study. We not only present the results of the research project up to that point, but we also make sure that we do something informal as well. That is greatly appreciated. You need a binding factor like that in a long-term study. It feeds the contact, it gives you the feeling that together you are bringing the research to a success. (...) In an informal atmosphere you hear a lot more, which gives food for thought - from molecular focus to impact of research.
(source: brochure Gespreksstof, only available in Dutch)
However things go, make sure that participants are kept informed of the progress or any delays. Evaluating helps to see how things can be improved from that point on, even if the participation goals are not achieved.
Depending on the type of research and the phase in which a project is, there are many possible forms of participation. From a conference where patients give a presentation to mirror discussions, conducting interviews/surveys or setting up a user committee. Be creative and look for a form that fits the project. And don't forget to ask the peer experts what they think is the best way to contribute.
Of course, during an intensive process like participation - which demands a lot from all those involved - sometimes things go wrong. A few practical examples from the Dutch booklet 'Een 10 voor participatie':
Experiential experts receive a training in patient participation. The trainer - himself working at a patients' organisation - explains that it is important to think carefully about the preconditions that make participation possible. One of the preconditions is to ensure that the meetings take place at a time that is also favourable for patients. Often, because of their condition, they need time in the morning to get up to speed. One of the patients who took part immediately reacted: "Why does this training course start at nine o'clock then?"
Lesson: discuss what time during the day is convenient for meetings.
The patients in a patients' panel assume that their interests are not properly represented in the committee on which the panel advises. They think that the committee only consists of scientists, without feeling for the input of patients. This turns out to be a presupposition. There is indeed an peer expert on the committee. In fact, it's the chairman.
Lesson: don't put yourself in an unequal and aggrieved position. Check whether your assumptions are correct.
In a study with young caregivers, it turns out that a parent for whom the child cared died at the start of the study. Yet the interviews about her experience as a young caretaker are continued. The child is very emotional. Regularly the interview has to stop. The researchers wonder afterwards whether this was ethically correct - and whether the research was worth all those tears.
Lesson: reflect on the choices you make. For example, do you place the importance of data collection above that of the young caretaker? Perhaps a cup of coffee together rather than continuing the interview would have been better. Discuss ethical issues with colleagues, and also with the person concerned. Emphasise that someone can stop participating in a research project at any time, without giving a reason.
After an meeting with patients, the doctor / researcher says: "What that patient just said was not right. As therapists, we have a very different assessment. But out of respect for the patient, I didn't say it. I am afraid that I will be accused of being against patient input, of not taking it seriously.
Lesson: always be sincere. Do not avoid discussions, but enter into them. That way you really take each other seriously.
© ZonMw 2020
Author Marieke Kessel Photography Shutterstock