In this topic page, we describe how patient roles have been determined in patient-researcher partnerships. Researchers and patients told us that it is important to have open discussions about expectations of the partnership and that determining a role for patient partners should be a joint decision between all involved.
Feel free to jump to the following sections:
Deciding on patient partner roles in projects
Types of patient partner roles and managing expectations
Deciding on patient partner roles in projects strong
Both the patients and researchers we interviewed agreed in general that patient partners should be part of the conversation when deciding what their role would be on research project(s). They emphasized that these conversations ideally should take place in early project planning.
Role determination
So initially the project was in its infancy, so right at the beginning, and they were still trying to figure out like a role of a patient.
For most, having clearly defined expectations about what researchers and patient partners wanted out of the partnership was helpful in determining patient partner roles on the project(s). A common suggestion was to develop a formal agreement for the partnership.
Role determination
So we co-designed the terms of reference together so it wasn't just like our team giving them a thing that's this is what we want. We like sat down and talked with them about sort of how they saw themselves fitting in the team and what they wanted to contribute, what they might be interested in. Told them a bit about some of the ideas we had and stuff.
For some patient partners, when their roles were not clearly defined and researcher expectations were not clear, they felt that this took away from them having a positive experience working on the project(s).
Role determination
In this case, I had gone to a number of meetings and I had never got a sense of where this was going? What a tall part I would be playing. It just never got there. Like, it seems like, he was discussing his project and, stuff and, you were just sort of left sitting at the table.
Taking time to reflect on their role and expectations of patient partners was important for some researchers. For junior researchers, learning from other researchers who have experience with patient-researcher partnerships was helpful to navigate this process.
Role determination
Right. So, again, I got lucky, going into a team that was quite experienced with this already and had the resources laid out. And, so,[mute] had developed what's called the community school of guidelines. So, it's a, it's just two pages. It's relatively simple, but it's very clear.
Types of patient partner roles and managing expectations
The term ‘professional patient partner’ was identified as something to be avoided. It created inappropriate expectations for patients and researchers in the creation of partnerships and was problematic for those who mentioned this. Researchers and patients alike discussed that patients should not feel that they have to commit to being a patient partner for the full length of the project timeline. As well, patient partners should not be expected to have a professional clinical or research degree to be able to participate as a patient partner in any role.
Role determination
Okay, so there's one trend that's happening in patient engagement research that I find disturbing and that’s the - and I've heard espoused at various conferences that I go to - and that's the one where people, some people are of the opinion that if you're not involved in the project from beginning to end, and then it's not meaningful patient engagement.
There was general agreement that patients should be able to be involved as patient partners in both short- or long-term commitments and the type of role can vary depending on specific project opportunities and patient interests. Researchers and patients acknowledged that researchers need to be flexible about where they involve patient partners and expectations around time commitment.
Role determination
Patient partnership is a mosaic and there has to be a multitude of approaches, I think both in respect to the patient partner but also to the researcher and I talk about – you know, oftentimes when I’m talking to leaders in health care and I’ll include researchers in that, pick one thing. Pick the one next thing that you can do to facilitate better collaboration with patient partners.
Role determination
Well back to I think the old-fashioned view that you have to be on-site, you have to be sitting around a table with a researcher, or you have to be contributing something. Well, wait a minute, and also research in the beginning –like when I get involved with a task force they’ve already done a lot of the research and they’ve done the collation of the research.
As well, as the project evolves there may be other opportunities that arise for patient partners to get involved in other roles.
Role determination
I mean the limits are the same for everybody. Time, resources, ability and so on. The limits are the same. But in a research project, if a patient wants to get involved and then really conduct research then it’s something that we’re going to have to, you know.
Patients suggested that patient partners need to be their own advocate when having conversations with researchers about what their role will be in the partnership, as well as when they feel that the role is no longer working for them. As well, patients should feel that they can say no to any role that does not interest them and/or fit with their availability.
Role determination
I'm trying to remember, that was a long time ago. So we had three women from the community who were involved in the project. And at one of those - I mentioned that we had some trainings that we were all at, I guess probably the final of the trainings we kind of did a I guess an orientation to the project.
Role determination
I would like to be involved from say ground zero, and then just throughout the entire process because it's kind of like --it's a little project that you start working with and you want to see it flourish into --it's a little seed and then it flourishes into a beautiful flower. But I actually, physically have to take a little pause because I'm scheduled to have my baby next week.
With more experience working with researchers, patients may find it more comfortable to speak about how they want to be involved in the partnership.
Role determination
Yeah, it’s kind of a hybrid, it’s kind of all over the place. I mean, I’ve found – and that kind of can be a challenging thing if you're new to this and you haven't really figured it out. If things are almost too nebulous and you're new to being a patient partner, it can be really tough, you know