The self-study addressed the experiences of research teams and how the teams worked through issues they encountered in the course of POR KT/implementation science methodological research. Four themes detail the challenges experienced and how teams addressed them. The themes are undertaking KT/implementation science methodological research that explores approaches and processes, making a good match in forming a research team, maintaining well-functioning research teams through times of uncertainty and change, and being attuned to the external context and its effect on the team. Quotes are identified with pseudonyms and team member positions (Lead, Academic, Patient/Public, Trainee (graduate student), Research Staff).
Undertaking KT/implementation science methodological research: working the process
Through the course of the self-study, we explored whether KT/implementation science methodological research was different than other forms of POR, KT, or implementation research that involved stakeholders on research teams.
Team members spoke about how they experienced methodological research approaches differently than clinically or service-focused projects. They said that it was less “concrete” than other projects. The lack of concreteness was experienced by members of four teams, “In methodological [research], you talk about how to work the process” (Eddie, Patient/Public). This focus on process was unfamiliar to many. “When we started this project, we were all dealing with something that we didn’t know” (Bev, Trainee). The focus on process meant that the projects remained dynamic and exploratory, requiring openness on the part of the team members. “Honestly I didn’t know what to expect… We’ve been figuring it out as we go” (Pat, Patient/Public). This openness demanded that team members develop trust and be flexible. As Dana (Patient/Public) said, “there really needed to be a tremendous amount of flexibility”. Even though the project direction was clear, the steps to get to the goals were created as the project unfolded. A direct relationship to participants’ health conditions, health care, or health services was non-existent or tenuous in all projects. As Bev (Trainee) said, the project is “so far away from patient care, in a sense, and so open.”
The projects differed in terms of their development. Members of the team that studied the translation of knowledge to a specific audience through familiar media did not find the method to be as vague or exploratory. Nevertheless, some patients/public members still noted the need of a clear “roadmap” in order to feel comfortable on the research team.
Forming the research team: making a good match
Each research team approached the formation of the team differently. Members on some teams had longstanding relationships, including with patients/public members, while on other teams, most members met for the first time. In the Stage One interviews, team members talked about finding a fit with both the people and the project. A good fit was described in terms of having shared research interests, a common purpose, shared values and philosophical alignment, or achieving mutual benefit; that is, a fit with both the team and the type of research. “[There’s] a good fit with the priority problem that we’re working on ….” (Ivy, Academic).
In subsequent discussions, patients/public members identified the word, “match”, to be a better descriptor than “fit”, as “match” reflected their experience of agreeing to match their skills and knowledge to the needs and goals of the team, to be full members of the research team. Match reflected their perceptions of the importance of being on an equal footing with others on the team, rather than fitting into or being “assimilated [into a pre-arranged] research world” (Billie, Patient/Public), largely in a secondary role.
Creating a diverse, relevant team
The teams were diverse. As one member said, “I’m working with people in different disciplines than I would typically be working with” (Harry, Academic). Forming the teams took time and specific, intentional actions on the part of the team leads and team members to identify individuals who could fill different roles for the methodological study requirements. One patient/public member, for example, was also an expert in media technology, a needed skill on one of the teams. Another team benefitted from a patient/public member’s experience in community engagement. Clinical fit was not particularly of concern in these methodological studies.
The methodological focus meant creating new teams. “On this project I’m working with all new researchers and partners… that was because [Lead] reached out to all of us and had a conversation with us about our different priorities and then did a little bit of matchmaking” (Ivy, Academic). The research leaders drew on previous relationships and networks. For example in a community-based research project, “We had developed such strong partnerships with different organizations and so it’s never a difficulty to find partners that are patients because we’re always in contact with them, they’re always interested in what we’re doing. It’s an ongoing relationship, whether or not there’s a project going on.” (Sue, Research Staff).
Some teams experienced gaps in their composition over the course of the project, when it became evident that some voices were missing. Some patients/public members expressed the need for both representativeness and diversity. They thought that by engaging patients/public members who had previously worked together, the team would hear “the same voices over and over and over again” (Eddie, Patient/Public), the team would “not adequately reflect” (Francis, Patient/Public) the community, and the study would not benefit from “the diversity of experiences” (Eddie, Patient/Public). Some patients would also be prevented from having “a chance to participate” (Pat, Patient/Public). Other patients/public members, who spoke about the importance of research expertise gained during their time on the teams, identified alternative perspectives about engaging new patients/public members, including engaging those with team experience. They raised the point that patients/public members’ expertise may be as important as expertise amongst the researchers and that “having the relationship with the researchers [allows patients/public members to] work much better with somebody that you know, that you’ve worked with” (Billie, Patient/Public).
Matches could also be limited due to structural issues related to uneven power dynamics, such as daytime research meetings, that were set to accommodate academic members’ schedules, when some patients/public members who worked could not attend. Compensation for work time missed or expenses were other potential barriers to engagement.
There’s a structural thing, in terms of barriers. We’ve designed a system that works well for the researchers. And then we end up with a specific group of people that can fit into that time. Then we get the same old people over and over again. And then we say, “Oh, there’s no diversity.” (Billie, Patient/Public)
Matches were made when team members recognized connecting agendas, came to common understandings, and appreciated differing perspectives. A good match occurred when team members gained and maintained a sense of shared purpose and mutual benefit. Not surprisingly, academic researchers and patients/public members came to the project with different and sometimes overlapping expectations and perspectives. Both came to the project with, “the expectation of learning more about the situation …. and how to influence change” (Eddie, Patient/Public) and consensus about “… what they want the outcome of the study to be” (Alex, Patient/Public). Differences in involvement lay in “why [academics and patients/public members] want that outcome to come to fruition” (Alex, Patient/Public), or how the process of engaging with the team could benefit themselves. Some noted differing reasons for involvement. Chris (Patient/Public) noted that goals were different, that: “…goal as academics is the research project” and what they can gain out of it, while patients/public members became engaged as part of their own care and healing, or with the question of how “it's going to affect me, personally going forward? (Eddie, Patient/Public).
Moving from a good match to a functioning team
Initial discussions between team leaders and team members, often before the team’s first meeting, were critical to ascertain and affirm the various members’ perspectives and agendas in an unfamiliar area of research. As Laird (Academic) said, “it was to try and find what people’s thinking around this approach was and what their experiences were. And they’re all different”. One patient/public member recalled a meeting over lunch with an academic that allowed them to get to know each other, to gain some common understandings, and to clarify their own and each other’s perspectives. These initial discussions were helpful in allowing team members to hear and trust each other.
The small connections that were already there were very, very helpful… it was easier to get more acquainted and to be more open to – everybody needs to approach this openly, being ready both to listen and to speak. And to have people around you that you recognize a little bit. Just the slightest connection, it will give a platform for further discussions. (Jules, Trainee)
Becoming a functioning team took time and specific, intentional actions on the part of the team leads and members. Taking time to get to know fellow team members and roles is commonplace at the start of a research project. Becoming a functional team, however, was complicated by the methodological focus on process, the interconnections with the social, political, and/or healthcare contexts that are part of KT/implementation science research, as well as the exploratory approach taken by some teams.
Methodological research’s lack of concreteness sometimes exacerbated feelings of vulnerability, especially for the patients/public members and trainees, who indicated a lack of confidence, particularly when a language barrier prevented them from understanding the many technical components of the discussions, or hampered their confidence in speaking out. The lack of a specific, clearly delineated content topic was challenging for some members and may have affected how they contributed. More clarity meant “what is the purpose… what is the end goal…what is expected of the patient… we need a more definitive road map” (Chris, Patient/Public). Greater clarity was needed by some to feel that their participation was not “a waste of time….” (Kim, Patient/Public). Despite the desire for clarity, a definitive road map at the project’s outset was not possible for most of these methodological research projects.
One patient/public member suggested that the match with the research team be treated as a volunteer opportunity that could be enhanced by an interview and a clear job description of what was expected of the patient/public member, and what they specifically would get in return. The match was also about the team being ready for the individual patient/public member, “to mentor, to bring them along” (Francis, Patient/Public). Most of the team leads spoke of actively developing their teams throughout the project, at the same time as completing the research.
Maintaining well-functioning research teams: working intentionally yet flexibly
The teams found that they needed to work flexibility, yet intentionally as they implemented their projects. Throughout the projects, the teams needed to actively work to maintain ongoing agreement on a common purpose, keep a patient/public focus on methodological issues, and explicitly attend to communication, power dynamics, and language. How the team leads and research coordinators enacted their roles was key in these efforts.
Keeping the focus on patient/public oriented methodological research
Even though the initial team development steps focused on sharing perspectives and coming to a common understanding, teams needed to regularly communicate and revisit the goals and understandings throughout the project.
Communication to gain understanding of each other and the goal needs to be happening all the time. Consistently going through checkpoint milestones, throughout the course of the study. You can’t expect to sit down in a meeting, talk about it, come to an understanding and then that's it, and expect [that understanding to be the same] throughout the course of a one to two year project. (Eddie, Patient/Public)
Several of the patients/public members talked about how easy it was to “lose the plot” (Chris, Patient/Public), that is, lose track of the steps of the research, not only because of the gaps between meetings, but also because of the vagueness of the research, the focus on process, and the unfamiliarity with much of the methodological language. As Chris (Patient/Public) said, “It is easier to lose the plot as it is not directly relevant to what is important in your everyday life.” The experience of losing the plot also contributed to a lessening of some patients’ confidence to contribute to the discussions.
Patients/public members played a number of roles in the teams, drawing on the skills and perspectives they brought in from their life experiences, occupations, and skills. One important action was to ground the teams that were often focused on exploring concepts and process.
And he says, “as a patient it is this…” When he speaks, I can see very clearly that that’s the angle he’s taking at this meeting. To me that’s very helpful. I think it’s been very helpful for the group. It’s kept us grounded. (Rae, Team Lead)
They were also essential in keeping the teams on track to implement the methodological research plans in a patient-focused manner. For example, “At each stage [patient/public member] would be reminding us to be mindful of what is the patient voice in this or how does the patient need to be considered” (Sue, Research Staff).
Patients/public members made important contributions, not only in ensuring clarity and relevance, but also supporting the expression of vulnerability and supporting humility within the team.
And [patient] was very vocal when it came to, I don’t understand what you are talking about. What does this mean? … I think it had an effect on the atmosphere of the group. It was allowing everybody to show their limitations, in a sense. He helped develop that atmosphere of being secure in the group [to ask questions] because that helps everybody. (Bev, Trainee)
Actively leading the team: team leads and research coordinators
The team leads played pivotal roles in developing the teams and keeping them functioning through approaches that were intentional, respectful, and sensitive. When team leads actively incorporated patients/public members as researchers within the team, they felt supported, connected, and on equal footing within the project, regardless of societal roles. As Rae (Lead) said, “That’s what I wanted to establish. As not a professional role or patient role but as people on a team”. This was accomplished, from the patients/public members’ perspective, when the team leads recognized the vulnerability of the members, and portrayed “an attitude, like total respect, totally listening to what I was saying” (Chris, Patient/Public). This approach in the “little moments” (Kim, Patient/Public) helped to “give weight to the moments” without condescension. It went “a long way to building that self-esteem and relationship with the team” (Chris, Patient/Public).
The team leads’ skills were critical in helping the patients/public members to be heard. “I would say, there’s nobody in this group that… doesn’t have their voice heard…. Part of it is having an academic lead who is mindful of that… and lots of experience facilitating team meetings” (Mel, Academic). A trainee noted the effect of working in this way. “It creates the atmosphere of respect, of being listened to and listen to others and make sure that everybody has a voice” (Jules, Trainee).
Maintaining connections and fostering ongoing, productive actions took a lot of effort and time on the part of the team lead and the team’s research coordinator, including conversations outside of regular team meetings. As Laurie (Lead) said, “There is a significant amount of time that you need to set aside to build relationships with your patient partners and to have that review of communication outside of the team meetings with them”. This process clarified conversations, gave patients/public members, who might not be as forthcoming in the larger group, time to voice their concerns, and allowed teams to be flexible in implementing their research plans. As Nora (Academic) observed, “[Lead] has had to have additional conversations about, okay, we need to be flexible with this or that, because it now looks different”. This sensitive attention to communication also provided the opportunity for some team members, who continued to feel lost well into the project, to find the plot again.
Working through differences in perspectives, power, and language
Team members found working with differing perspectives to be a messy process, often repetitive, and frustrating. A common purpose helped, but the teams did not find a straight-forward path to achieving it. The process reality of methodological research required flexibility, achieved through extended discussions, respecting other’s views, listening for understanding, and trusting. The process took time. “Just having those conversations about what people understood things to be, and then trying to find that middle ground, of kind of collective agreement of what we were actually trying to do here.” (Harry, Academic).
Patients/public members noted the importance of acknowledging the power imbalance. “At the end of the day. I don't have the final say. And it's the researcher who has more power than me” (Billie, Patient/Public). One team consciously incorporated the principle of reciprocity, with time built into each meeting for personal updates and sharing news. The Lead always scheduled patients/public members to speak first and checked in with them by telephone before making major decisions so they could take a team-based approach and deflect potential power imbalances.
Some patients/public members wanted to be part of each and every step of the research process, “I'm really struggling with even the concept of not being included in every team meeting, when I'm part of a research project, because things are said and done” (Francis, Patient/Public). Others were satisfied with various levels and types of engagement at different stages of the research.
Finding a common language was not straightforward. “We have to be really mindful about the language we’re using to make sure that it’s inclusive and not intimidating for folks… it is an ongoing struggle” (Jan, Patient/Public). The language of “patient partners” was contested by the patients/public members as it denoted an assistant role rather than a full researcher role. One suggestion was that in POR, the language be “patient researchers and non-patient researchers” (Alex, Patient/Public). “I know that I'm making a difference, just the same as any non-patient researcher can know that they're making a difference” (Alex, Patient/Public).
To address the dynamics of methodological research and the issues that arose during the research, teams needed flexibility to make changes to the project when in progress. “It’s a bit of a dance to get it right” (Gerry, Lead). Humility, flexibility, and responsiveness to patients/public members’ concerns were especially needed when external issues influenced the studies’ implementation and approach.
Being attuned to the external context and its influence on the team
The teams continued their work throughout the pandemic and the societal shifts that happened during that time, including the Black Lives Matter movement and the Canadian commitments to Truth and Reconciliation with Indigenous Peoples. These events required the teams and team leads to reflect on handling change, building relationships in the teams and enabling different perspectives to be heard .
When events outside the teams’ control interrupted the research project, such as COVID 19, teams initially halted work. “Everything stopped because of COVID… everything shut down” (Rae, Lead). They regrouped and continued with other activities (e.g., preparation of documents) and reworked their plans to respond sensitively to the external context, through addressing the process of the research.
[COVID] essentially halted the project. We were in the process of developing and finalizing a development stage…. And that’s essentially not going to happen at this point in time at all. And I don’t know when it will… We’re trying to move on phase 2 and phase 3 … together so that they’re happening iteratively. (Laurie, Lead)
One project’s focus and content changed to incorporate the reality of the pandemic’s impact on health service delivery, “everything has changed…” (Rae, Lead). Another team, “has had to have additional conversations about, okay, we need to be flexible with this or that, because it now looks different…” (Harry, Academic). In this time of anxiety and uncertainty, several teams expressly talked about how to deal with changes, "Because it is an empathy and a respect and a genuine care for everyone on the team” (Diana, Academic).
The Black Lives Matter movement intensified awareness of issues of membership, equity and racism in the context of methodology and the team. There was a call to expand who was involved and a suggestion on one team that patients/public members should not work with the team more than once. Teams also reconsidered knowledge translation products and their accessibility to different groups. They raised the importance of breaking usual assumptions and ways of working. “We need to get out of way, break the cycle of’same old, same old patient’. We have to change and do better for people out there in the community who are not privileged” (Francis Patient/Public).
Addressing these issues in the midst of already non-concrete, processual approaches to methodological research was challenging. The team leaders and research coordinators were key in ensuring ongoing communication and helping the groups to keep focused on the research so as not to “lose the plot”, while surfacing the tensions and working through them, all through the electronic communications required by the pandemic.