Table 5 Patient/caregiver perspectives on what supports knowledge mobilization

THEME 1:

Value and trust stem from belongingness

Importance of facilitating belongingness and safety

I find that like there are certain environments like where you're, again, valued as a whole person and you're like, “Hey, [participant], how are you doing today?” Just like even basic human connection moments. … I'm here for more than just sharing, you know, one or two sentences about my life. [7827]

Belongingness communicates the value of the patient/caregiver perspective

I think I'm already coming to the table with “I'm not equal”. I think it's getting better, but… It's sort of like… everyone always says, “Oh, your voice is so valuable,” whatever. But are you really listening or are you just going to go on… [0374]

Specific actions to demonstrate a commitment to facilitating belongingness

It doesn't make sense to have a whole team of paid team members, and then you invite a bunch of parent partners…and their expertise in that lived experience, and then not pay them. That does not help with softening edges of our hierarchy. [1792]

THEME 2:

Accessibility in patient/caregiver relationships is facilitated by leaders

Life experiences can impact one’s ability to participate

I had to reflect on how [the resource] would have impacted me in terms of like my fear of [illness] number one as a child… And like that's a heavy topic, right. It's emotional. It's vulnerable. [5736]

Pain-related barriers can impact ability to participate in KM activities

There's a big misconception that you're kind of flaky like when you live with a disability. And it's really just like you need flexibility. It's not to do with like your level of commitment. Because you can be totally committed to a project and like be passionate about it, but your health is a roadblock. [7827]

Structured opportunities and adaptations to participate in KM activities are important to create space for contributions

And the person who was leading the group was really conscious of letting [patient partner] speak. Like giving her more floor time because she spoke slower, because it was a little bit harder to understand over Zoom, because her words were so wise. [0374]

Team leaders are viewed as responsible for identifying and enacting accommodations

But [the leaders are] very mindful… Like they'll do all these check-ins…You know that if you have something to say, you can. Or you're constantly reminded that you don't have to talk about things. …It's reassuring. Because if you ever do feel like you want to maybe stop and backtrack and take a bit of a different path, you know that you can. [9798]

THEME 3:

Engaging patient/caregiver partners with relevant expertise

Value and respect for lived experience as expertise

Patients have for a very long time been considered the bottom of the totem pole. And I think that's because our stories weren't valued. …It's not just about the science, it's about how it affects me as a person. [3236]

Including diversity of lived experience increases utility of KM activities

…I think you also need a variety of expertise and lived experience… Just because my experience could be drastically different than the person sitting next to me… It's hard to make a collective when you only have kind of one perspective. [2112]

Necessity for greater representation and diversity of patient/caregivers as partners in KM activities to inspire others to participate

I feel proud of myself when I'm that representation. Like I'm in that [output] for the project. And I'm like, look, it's somebody that looks like you. Like I promise you, you're not weird for doing this. [7827]

Expertise of the patient/caregiver partner must match the KM activity

Maybe it's easy to pick the [partner] you already have a relationship with, but they don't really have… This parent isn't in [the illness] community… It will inform the research from the very beginning if that person has experience with that specifically. But it also helps at the very end when you're trying to share it with the broader or with perhaps a more niche group of people. [1792]

THEME 4:

Networks serve as communities

Networks of patient/caregiver partners spread evidence and resources, and facilitate connections between partners

Informal networks can be incredibly helpful just for matching people with new projects. You know, if a researcher comes to us and asks us… “Oh, I don't know anybody. No one seems to know anybody that would be part of like a more marginalized group to participate on the research,” right. And we found… we work with like two people regularly. [0015]

There is expertise in navigating networks to effective share resources and knowledge

And that's what I think the network is really all about. It's about whatever supports you have, that's great, that's fantastic, but what are you missing? And then how can we provide that for you, to you? Is it available, first of all? And if it isn’t, okay, what can be available, and then how do we get it, how do we deliver it? [9798]

Networks as a place of connection and trust

…I have that network of people to talk to and be like what is appropriate compensation, what is, you know, the right way to navigate this? But if I didn't have that, and I was young and I didn't have that experience, I don't know how comfortable…Like I think I would have just kind of gone with whatever was happening. [3236]