In this topic page, we present the ideas that patients and researchers shared with us about how to define partnerships and what it means to have a true partnership. As well, we indicate participants’ preferences for the terms and language commonly used to describe patient or caregiver partners.
Feel free to jump to the following sections:
What makes a true partnership?
Does terminology matter?
What makes a true partnership?
A true partnership was described as researchers and patients working together on a research project towards the same goal. A partnership should go beyond patients being involved as participants, and instead, involve patients in shared decision-making at points throughout the project. To read more about how patient partner roles were determined, you can visit Role Determination.
Wendy constantly reaches out to the Indigenous community she is working with for input
Well a true partnership is where the idea – the problem that the research is addressing has been co-determined by both, and again that’s the voice, I mean really it’s more determined by the community; and then … having their – I don’t expect the people in the community to […]
Researchers should ensure that patients understand what it means to be a patient partner and collaborate together on a project, suggests Marc
It is important to know the level of relevance, for sure, the more the research team… The more the research team tells the caregivers about the repercussions that they may have or the level of collaboration that is relevant, the more information concerning the level of collaboration and the repercussion […]
However, in some cases, such as rare diseases where the patient sample is small, there needs to be flexibility for patients to be able to participate both as partners and participants (not necessarily at the same time).
Maureen feels that opportunities for patients to be involved as participants and partners is important, particularly in the case of rare disease
We want to make sure that, especially in rare diseases where we’re working from a small pool, we want to make sure that we don’t turn the trend around and we still – but I think when you have patient partners, well the studies have shown that your recruitment is […]
Some mentioned that there is a responsibility for researchers to ensure that a true partnership exists and that everyone remains on the same page throughout the partnership.
Partnerships with patients involves on-going negotiation in Janet’s experience
So there’s all kinds of roles for community partners in research, and in fact it’s really up to them to let me know, I think, like how they want to be involved. And in the example of the Research Ethics Board, yes, she had the whole community placed on – […]
Researchers should also consider that patients can contribute meaningfully as partners based on their lived experiences regardless if they have the same illness or disease that is being focused on in the project. For example, one patient discussed how their experience and insights may be relevant for other patient groups.
Maureen feels that her lived experiences can have relevance to other patient populations
Right, so some people think that you have to have that condition, or you have to be affiliated with that condition to contribute meaningfully, so no, for me it’s not. So in my area, I don’t need any research right now, I’m doing well, I’m good. But it doesn’t mean […]
Overall, what it means to have a true partnership can be different depending on the individual, and experiences will vary based on how each partnership is structured. However, there was complete agreement across participants that a true partnership does not involve using patients as tokens to meet any institutional or funding requirement that necessitates the inclusion of patient partners on a research project.
Practices and experiences with partnerships are highly varied, from Claire’s interactions with others involved in partnerships
I would have to say that I don’t think there’s usual practice. I think it’s really varied. I think my experience may be different than other people’s experience. In fact, the other thing that I was involved in was an event held by Cancer Care Ontario, looking at quality and safety […]
Tokenism is not indicative of true partnership according to Maxime
I think a true partnership is when again the patient voice is heard and incorporated every step of the way. Because you can hear patients’ voices sure; you can maybe feel like — you can maybe only have the patient’s voice there for tokenism sake, it’s only being there just […]
Does terminology matter?
There are many different terms that have been used to describe partnerships and/or patient partners. Often the terms patient partnership and patient engagement are used interchangeably and may have different meanings depending on the individual or context. For some, differentiating between the two terms can be difficult because they feel that patients can be engaged in research across a spectrum (e.g., as a participant in a research study, as an advisor, or as a partner).
Patient engagement can evolve into a full partnership, suggests Dawn
So for patient engagement, I actually like the Carman framework that is about the different levels of patient engagement. And when I re-wrote the framework, I actually added a line for – as part of a research team, where if that’s full partnership, they would actually be a member of […]
David considers the meaning of the term patient engagement
As for the engagement thing, I think engagement is really difficult to… I also have problems with it and I’ve thought about it and patient engagement, we put them together and English grammar allows us to put them together, patient engagement. We tend to assume it’s a patient being engaged […]
Furthermore, patients and researchers discussed terms they have used, or heard of, to describe patients who are involved in partnerships. Patients also shared their preferences and dislikes.
Examples of preferred terms:
- Patient partner
- Patient advisor
- Patient-caregiver dyad
- People with lived experience
- Community scholar (as per example from Indigenous project)
Examples of non-preferred terms:
- Patient engagement expert
- Patient representative
- Patient champions
For example, one patient liked the idea of a term that was more broad and encompassed people who come to the partnership with lived experience.
Karen prefers using the term ‘person of lived experience’ for patient partners
Patient partner, patient engaged research, the lived experience piece, all those are comfortable for me. I may often speak, saying I’m a person of lived experience, because, my lived experience is significant in so many different areas. And, in one lifetime, it’s incredible how many places you cross. I come from […]
There were mixed opinions about whether or not it is important to have one common term. For some, they didn’t have a particular preference for a term, but mentioned that it may be less confusing if there were one, or a few, common terms used universally. For others, all terms essentially had the same meaning and what was more important was how the partnership was being managed.
Suzanne prefers there were common terms used for patient partners
Interviewer: What would be your preference for terminology? I honestly don’t know. Partly because it needs to be something sort of generic and fluid so that it’s not so restrictive that people can’t participate, who have a legitimate right to participate. I don’t know, citizen participant. Yeah, it needs to recognise […]
Patient partner terminology all has the same meaning, according to Carol
It’s basically all the same thing! It’s all different fancy words. You know. And, basically it all comes to the same thing, and it’s about communication. Getting answers, or input as to how to better deal with things that will come to us down the line from today, tomorrow, so, […]
However, when researchers are working within a community, any term that includes the word patient would not necessarily be appropriate.
Partners or community partners are the terms that Wendy uses to describe the people she works with in the community
Well terminology does matter [laughs], terminology matters a lot. But that’s sort of an interesting question because it makes me reflect on when the question – when I ended up talking to a community group about their roles we started that by asking, I asked them how would they like […]
The term’ patient engagement’ does not apply with community partners, says Franco
And so, it’s in consultation with community leaders every year where we have had a longstanding model of partnership. I don’t think I would use the term ‘patient engagement’ because we don’t use the term ‘patient’ there. This is really a community health model and so, it’s really community engagement […]
Review date: 2022-03