Table 2 Quotes of interview participants that illustrate their experiences and perspectives on motivations, goals and expectations

Motivation

1A

“I’d consider the project successful when a top 10 is produced that is supported by all stakeholders. From the start that was the goal I had: developing a shared research agenda.” (S9_c)

1B

“And to hear from patients, you might think your research is interesting, but what I encounter in practice is this problem and I would really like a solution for it.” (R211_o)

1C

“Well, as I said before, my son has recovered, more or less without the use of medication, even though his condition was severe. And we have done certain things for that, and I want to stress that… surely, those aspects also have to be considered in research, because it is a completely different perspective and approach that can be successful.” (R184_o)

1D

“ In the West it is considered strange and when you have medication, it’s something special, and here nobody bats an eye, it is more inclusive. “ (R52_p)

Goals

1E

“For me, from the patients perspective, it will be successful once we have a clear agenda or priorities of what should be investigated first in JIA research. And that in those priorities, the patients perspective is considered as well as parents and the clinicians. That it comes together into a shared research agenda, with the opinions of different stakeholders carrying equal weight. That would be a success.” (S11_p)

1F

Well yes, but what’s the value of a research agenda that is not implemented? Therefore I think that ideally the project would not stop after the formulation of the research agenda. Because we cannot be sure that academics will pick up that research agenda.” (S3_p)

Expectations

1G

“ What I hear from these people from the UK is that the steering group, well facilitates a process, where people get to know each other better and learn about each others’ perspectives. It has been described before, that afterwards, people who were part of the steering group say that they have learned a lot from being part of the steering group.” (s1_o)

1H

“I had, well, the expectations were of course… Once we started I actually did not have any expectations, because it was the first time I participated in such a project. Also in my role as a parent in such a project, so I did not have high expectations. (S12_o)