Table 2 Themes and recommendations derived from the analysis of workshop with co-researchers and academic researchers with selected quotes^a

Why Patient involvement?

I thought that those who don’t have the same resources I have would really benefit from being asked – what are you actually thinking? Is there anything worrying you?

I thought it could help keep ‘a hook’ into the complex world of emotions, conflicting interests and needs, that fluctuate.

We hope it can benefit those that cannot or do not have the resources to get involved in their own treatment (CR).

Proactive and reactive reasons for getting involved

Increased appreciation for team work

I believe I can contribute with something. I have had a lot of bad experiences. I have also had some good experiences

It feels like every time I have co-researchers involved, that I am sort of forced to go back to my data. I can’t just say ‘I’ve collected all my data, now I can do the rest behind my desk’

You are forced to doubt (AR).

Ensuring patient-centred research

Having ‘a hook’ into reality (AR).

Bad experiences have also been part of my motivation. I want to do a good job, but it [decisions to get involved in the project] was also [because of] frustrations about some of the experiences I have had

Focusing on patients and continuously revisiting data (AR).

Some of what is also really beneficial is that we have to translate, explain and justify why we do things. You are made to be very reflective.

Patients contribute something special that doctors or nurses don’t. Especially in this type of research where we are trying to figure out what is important for patients or find out something about the patients. They validate it a bit more…they are just a bit closer to knowing whether we’ve got something.

I hope we can help people get a better treatment than we have had

The reason you join this kind of thing is to protect the weakest in society.

I expect that it would lead to a better definition of patient involvement in research

When Involvement?

If it is too far from ‘the floor’, e.g. something about medicine, it can be difficult to utilise your experiences.

Patient Involvement should be incorporated into projects if they include the patient perspective.

I think people should involve patients, if it makes sense. Patients should only be involved if it is meaningful. It shouldn’t be [a topic] too far removed from what it involves to be a patient (CR).

Recommendation 1: In every individual project it should be considered whether it is meaningful to involve service users, and researchers should be asked to explicitly explain their reasons for involving or not involving co-researchers in their projects

You have to consider how it makes sense and there might be different ways and stages in which it can contribute.

If it is a study on operative techniques, it might be relevant and it might not, it depends on the method.

If it becomes mandatory, you push a few more people ‘over the line’. On the other hand, I have seen cases where there were patients involved, but no one was interested in them (AR).

Also depends on the size of the project. A project needs to have a certain size for it to make sense to formalise patient involvement.

Recommendation 2: When involving service users in projects it should be considered how they may be meaningfully involved, and if possible, they should be involved from the beginning, to make involvement as meaningful as possible.

It has to make sense

You have to feel that you can contribute

I think everyone should involve patients. It is our bodies after all.

If it isn’t mandatory, there won’t be as many people who can handle or dare to do patient involvement. It probably needs a bit of pressure, but how mandatory? It is not good to ‘push it’ over the head of every researcher.

All projects should argue why or why not they have people involved. Should not figure just as ‘icing on the cake’ (CR)

I know that you involve patients in other countries and I don’t know why you don’t have to in Denmark.

It is best if the patient perspective is included from the beginning.

How involvement?

Interesting conversations around the questionnaire. We agreed a long part of the way. Made good sense and was a really good day.

One of the things that has surprised me the most is how much it depends on my own abilities. Do I know how to frame what I want from them and help them get involved? I make many decisions about when to involve them. It is about finding out what sort of decisions it makes sense to involve people in.

Uncertainty – do we involve you enough? Sometimes you can get the feeling that it is going a bit slow – but that leads to an important transparency (AR)

Recommendation 3: Researchers need to be reflective and transparent about the desired outcomes of their projects and the role of the co-researchers in reaching those outcomes, but also acknowledge (and be open) about the possibility that initial plans may change and develop and find appropriate ways to communicate that.

Experiences of involvement activities

Being part of the interviews crossed some boundaries and was very enriching.

We have involved more aspects than I had imagined (CR)

It is important to have a good researcher with you in that situation (when interviewing).

We have tried to inform the co-researchers of the process and keep them up to date.

You might go from being an interviewer to being an advisor.

When the project was developed we didn’t know it would be so much [focus on user-involvement] (AC)

A lot happens between meetings.

Gained a lot from the data analysis. We saw each other’s perspectives on diverse interviews. Fantastic.

I feel a lot of responsibility towards the group.

I think I am more worried about whether they are allowed to contribute as much as possible.

Payment

I hadn’t even considered that it should be paid

Most co-researchers have not wanted to be paid, but some did.

It should be free of cost for patients to be involved. The question is whether they should be paid (AR).

Recommendation 4: Researchers need to carefully consider how service users are remunerated for their involvement in a project, at least making it cost-free for people to participate, but also considering people’s individual situation. Alternatives to direct payments may be developed to thank people for their time.

I have been convinced that you shouldn’t pay because if you do, it involves a commitment.

It should be free of cost and not so onerous to be paid [for transport].

I think it is difficult. Because then [if paid] it becomes sort of professional.

It might be better if patients were invited to participate in something as remuneration, e.g. an end seminar (CR).

For me, it is primarily the administration which makes me want to give up (paying people). Some people are also on benefits. I wouldn’t mind giving them something [else].

I think that if it involves a certain amount of hours every week, it has to be paid, but as long as it is just a few meetings here and there, it shouldn’t.

Recommendation 5: There needs to be better guidance and organisational support in how to reimburse users for their time.

I would like, for example, to be invited to a seminar [instead of being paid].

Training

The training didn’t make sense. We don’t need to be ‘mini-researchers’

Do you lose something by training people? I understand that you gain something, but do you also lose something else. The professional patient. Do you begin to see things in system and reduced if you are on a panel and trained.

It might not have been necessary to train the co-research group because we don’t need knowledge about methods and reflexivity and generalisation and subjectivity (CR).

Recommendation 6: Each project should include a training day for researchers and co-researchers where they can get to know each other, agree on an ethical codex for the project and discuss their respective roles and responsibilities.

It was good for getting to know each other, but we shouldn’t be trained to be small researchers, because that isn’t what we need.

No need for ‘mini-researchers’ (CR)

I think both groups (patients and academic researchers) should be prepared. There must be some good tools for facilitation, e.g. what are the good questions to pose? Can you become better in that? The point is that you don’t always know what you will get out of it.

It is easy for us to say that it is not necessary, but it might be for others… (CR)

Recommendation 7: Besides this, training programmes and initiatives need to be carefully considered in the context of a given project, its individual co-researchers, and the skills of the researchers facilitating the project

You shouldn’t educate patients in theoretical issues. You should train them to contribute with new things, not to think into the old paradigms – that is the challenge

Training needs to focus on what the patient perspective is. (CR)

People need an ‘ethical codex’ (CR)

You have to be able to understand the essence of the project. (CR)

… and your role. (CR)

We have discussed that we could use more training in facilitation techniques (AR).

Recruitment

Depends on the project if it needs to be about someone with a particular illness or more broad.

Maybe you could have a ‘structure’ e.g. a panel, which could be involved if it was smaller activities.

There have to be some criteria for recruitment (CR)

Recommendation 8: Recruitment and selection of co-researchers should be considered in every project in relation to its topic and aim, and with a view to ensure as diverse a group as possible.

Probably best [to recruit] through patient organisations. Not through doctors.

In the recruitment for the project we started out by saying that people needed to have an interest. We discussed the purpose of the project, so they didn’t think they were going to change all sorts of things in practice.

It shouldn’t be doctors who chose. You need to ask the patient organisations (CR).

Recommendation 9: Research institutions are advised to set up an organisation to support user-involvement and a panel which might be involved in smaller activities. This would require a thorough discussion of how diversity can be ensured within such a panel.

Do you dare to recruit via Facebook? (AR)

We strived to have diversity in terms of gender. And we also looked at diagnosis. We also discussed age a little bit and how far diagnosis had to be.

Facebook is genius in that respect. Most patient organisations have a Facebook page (CR)

You need to be able to work together

Is it particular types [of people] who get involved?

Lack of guidelines for researchers on recruitment (AR).

Researchers need to be less ‘scared’ of the patients (AR).

Terminology

I like [the term] co-researcher but does it imply that it is participatory action research? (AC)

Recommendation 10: It is recommended that the discussion around terminology of user-involvement is continued in the Danish context, to reflect the different roles and identities of patients.

You shouldn’t signal equality (CR)

In journalism you would call it ‘experts of consequence’ (CR)

‘Researcher’ sounds wrong in my ears (CR).

Could you call it ‘patient consultant’? (CR)

I would feel more involved by being called a ‘patient consultant’ than ‘patient co-researcher’ because I don’t do any research (CR).

It would be good if it was possible to find a good Danish word to cover this role (AR).

Impact outside or beyond the project

I mentioned it when I went to follow up and they said they had heard about it. That was fantastic.

Professionally, I have gained a lot of respect for cooperation and involving people. You have to make sure it is not just an empty work. It is more of an art. I am closer to being able to do better next time.

Recommendation 11: Danish researchers need more organisational support and clearer guidelines around the practical sides of user-involvement and it is recommended that a manual for user-involvement is developed in the Danish context, so that more researchers would feel able to involve service users in their projects.

I haven’t mentioned it in follow up, but I have said it to my GP. Talked to a lot of friends and family about it, and they think it sounds fantastic. You can motivate those of your friends who suffer from serious illness to ask more questions.

I think it has made the project more interesting and that it makes my work more interesting, because I am constantly reminded that it actually has significance for people.

I have just told it [to people]. For me it is important because I think it might have implications for my own profession.

I still don’t feel completely sure how to handle it. I think it would be so good if there were some guidelines.