The evaluation results offer lessons for how to build meaningful partnerships with Indigenous patient partners in research. Results point to a number of strategies pertaining to the four components of patient engagement: initiation of partnership; interest development; capacity building; and involvement in research.
The specific themes that emerged within each of the four components are presented in Fig. 1.
Initiation of partnership
Meet people in their communities
Recruiting Indigenous patient partners is a crucial first step in involving patients in POR. It involves finding effective ways to identify and approach potential patient partners to interest them in research. In this project, we learned the importance of initiating first contact with potential Indigenous patient partners in their communities. Due to budget constraints, this project relied mostly on remote contact (teleconference) with participants, which was perceived by patient partners and organizational partners as a main limitation to recruitment. Hence, project members unanimously agreed that meeting people in person in their own community would facilitate initial contact and relationship building with potential patient partners. One participant explained: “Maybe it’s going in the communities, meeting them ( …) then explaining well what the mission is, what you do in your project” (Interview, PP).
Build on existing relationships with local organizations and key community members
Apart from going directly to communities, leveraging existing relationships with local organizations, community leaders or trained patient partners can also facilitate contact with potential patient partners. In fact, one of the initiative’s main strategies was to link with organizational partners to identify and approach potential patient partners according to the initiative’s needs. In addition, patient partners can act as ambassadors by promoting the importance of POR and recruiting other patient partners in their community: “I think it is word of mouth, but that comes from them, so that a patient who is already a patient partner, I think it’s (…) the best person to go recruit, because they will have the experience, they will see how it works (…) (interview, PP). For example, during this project, one of the participants acted as an ambassador by recruiting her two cousins.
Interest development
Build trusting relationships with patient partners through in-person meetings and ongoing contact
Another finding is that building and sustaining the interest of patient partners in POR relies on using a number of mechanisms to ensure repeated personal contact and continued relationships. The in-person training workshops, where patient partners got to connect face-to-face, facilitated bonding between the patient partners, the organizational partners and the research team: “The meeting [workshop] where we were really all together; where we could look at each other in the eyes - I would say, and connecting with one another. Then the fact that we had lunch together, that was fun, and it changed the conversation” (interview, PP). Sustaining interest also involved frequently checking in, and maintaining ongoing contact with patients by phone or email. In addition, one of the patient partners was offered the opportunity to attend a conference and present the project together with the main researcher, which tightened the bond between them. The patient was surprised to realize that she could truly be an asset to the researcher, and the experience strengthened their mutual trust: “And also what I liked, it’s [the principal researcher]‘s trust. Because when we went to Toronto, she had someone who was supposed to help her, but that person was unable to make it. So then she said, ‘Can you help me?’ She trusted me. I enjoyed that″ (interview, PP).
Emphasize potential impact of the project for the patients and their communities
While POR does not necessarily focus on the communities in which people live, it is important to explain the potential impact of POR research projects for patient partners’ communities, in order to ignite interest and motivation in the research. For example, some Indigenous patient partners have a strong bond with their community, and were particularly interested in how the initiative could benefit their community. As an organizational partner highlighted: “I think there are people who are always a little bit worried to embark on things like this. ( …) Always worried what it is going to do, what it is going to bring them and their community in the end.” (interview, OP). Hence, their engagement in research projects can be improved by explaining how the results of the project could benefit their community at the end.
Capacity building
Establish a clear understanding of the patient partner’s role
Capacity building involves fostering skill development, knowledge acquisition and familiarization with conceptual tools needed for patient partners to enact their role. In this initiative, the ‘patient partner’ concept was central to our endeavour, but was a difficult concept to grasp for some, constantly requiring explanation and examples. As a result, we had several presenters exemplify various roles of patient partners to familiarize them with the concept. For most patient partners, the idea was initially very unclear, as one participant stated, “It’s certain that at the beginning I was lost, really lost. And then I was asking myself ‘what am I doing here’?” (interview, PP). Despite this initial challenge, participants came to better understand the patient partner role over time. Most of them noted that the repeated explanations, presentations, and particularly their involvement in projects helped them progressively understand the definition and roles of patient partners. This ultimately helped increase their capacity to take on the role.
Provide orientation and support skill development
Capacity building was a continual process, but for most patient and organizational partners, the one-day workshop they attended was a pivotal moment (from the interviews). One patient partner stated in the workshop evaluation comments, “Now, I really understand the concept of patient partner”. In this project, we found that skill development and knowledge acquisition proved to be central components as many patient partners initially lacked confidence in their capacities. Through positive feedback and positive reinforcement, the research team helped participants build confidence and express themselves openly, which heightened their level of involvement. One participant explained: “I was even surprised sometimes they said ‘Yes that’s a great question. We will look into that’; We could see that the team was happy that we participated ( …)” (interview, PP).
Involvement in research
Offer diverse opportunities for engagement
Getting patient partners genuinely involved in specific health research projects is the ultimate goal of patient engagement. Throughout the initiative, patient partners were offered a number of opportunities for engagement in external research projects. This allowed them to appreciate the spectrum of projects they could engage in and helped them better understand what POR was. This was also one of the main strategies used to strengthen the impact of the initiative. By integrating patient partners in actual research teams, we aimed to foster their involvement as a patient partner in research. A patient who was involved in an external research project mentioned that her involvement in a project allowed her to apply the information she had obtained from the orientation workshop (meeting minutes).
Be accessible and flexible in all aspects of involvement
Being accessible means providing full opportunity for all team members to be involved and participate. Throughout the initiative, patient partners experienced different life challenges (e.g. death in the family, being a caregiver for a family member, or receiving extensive treatments for their disease) or had obligations that prevented them from attending some of the meetings. The committee purposely scheduled meetings according to patient partners’ availability. In the interviews, some participants mentioned that they appreciated that the research team was flexible with time and felt like their own schedule was considered. This level of accommodation increased their willingness to be involved.
Access to communication technology is also important to consider, especially for partners located in remote communities and/or with limited Internet or telephone access. For instance, one patient partner had no access to a personal phone or the internet. In this case, an organizational partner acted as a resource person by providing office space and telephone access so that the patient partner could participate in meetings.
Being accessible also involves adapting to different levels of scientific or academic literacy. Researchers and health professionals often use technical or scientific jargon that can create discomfort and misunderstanding and make patient partners feel that they are not central members of the research team. For instance, in this initiative, the invitation letter required by the Institutional Review Board was, according to a patient partner, “completely incomprehensible ( …) people in his family did not understand anything when reading the form” (from the meeting minutes, PP). With the Institutional Board’s approval, the initial invitation letter was revised to ensure it was written in plain language, and was understandable to Indigenous patients who might not have French as their mother tongue.
Value patient involvement and contributions to the project
The time and energy patient partners give to a research project is an invaluable asset to research teams. Letting patient partners know that they are appreciated and that their contributions impacted the project seemed to be crucial to foster their involvement in other projects. For instance, a patient mentioned that feeling valued was a great motivator for engaging in projects: “This may be why I now look forward to getting involved in a new project - to feel valued” (interview, PP). Valuing patient partners’ involvement also implies offering them financial compensation for their time and work. One patient partner revealed that receiving compensation for her involvement was an interesting benefit (interview, PP). The importance of valuing patient partners’ time and contributions is especially important considering how some patients experienced low self-confidence within this initiative. In the interviews, one of the patient partners confided that she was afraid that the time invested in her was worthless: “And then later on I understood, I thought ‘so they are doing recruitment’. So, then I started being afraid that you invested in me, because now I get compensated, you take time to train me, but what if I don’t do the job?” (interview, PP). The research team showed participants that their involvement in this initiative was of great importance by expressing gratitude and providing positive feedback.
Patient feedback
As mentioned, all patient partners involved in the project were invited to a follow-up meeting where results of the project were presented and discussed. Four patient partners who had taken part in the interviews accepted the invitation and attended the meeting. All patients felt that the results represented generally well their experiences in the project, as well as what they said in the interviews. They find the four components of patient engagement (i.e. initiation of partnership, interest development, capacity building and involvement in research) relevant, as well as the strategies associated with each. Some patients questioned the wording utilized. For instance, one patient partner found the word ‘engagement’ unclear, and suggested to define it. Patients also offered advice related to knowledge translation of the results to organizational and community partners involved in the project.