3.1. Community engagement process
As presented in Fig. 1, we developed and applied a seven-step approach to community engagement: (1) goal alignment with system-level partners; (2) engaging with PHUs to understand priorities; (3) understanding community strengths and dynamics; (4) building relationships with each community and establishing the community engagement framework; (5) establishing partnerships with community members; (6) involving community members in the research process; and (7) feeding back and interpreting research findings.
3.1.1. Step 1 – Goal alignment with system-level partners
To initiate community engagement, the research team began by meeting with decision-makers of system-level partners—Ministry of Health of Ontario and Ottawa, Peel and Toronto PHUs—to assess needs and establish shared goals. Discussions led the Ottawa, Peel and Toronto PHUs to identify a need for a behavioural science approach to inform PHU activities to promote vaccination at a community-level. This step occurred during the second year of the COVID-19 pandemic, when the first few waves had passed, and vaccines were readily available. On a societal level, some of the trust that characterized the early stages of the pandemic was eroding or lost by this point.42,43 For example, some people felt forced to take the vaccine or were hesitant to do so, and others were apprehensive about how recommendations regarding vaccination were constantly evolving.28,44,45
3.1.2. Step 2 – Engaging with PHUs to understand priorities
When considering the different doses of a vaccination series, the application of Behavioural Change Techniques (BCTs) can vary significantly depending on the dose in question, as the psychological and behavioural states of individuals are likely to differ at each stage.28,46 For example, for the first dose, overcoming hesitancy might be key, necessitating education, persuasion, and possibly incentives to promote initial uptake. The second dose could require reinforcement of the importance of completing the series for full protection, with reminder systems and coping strategies to manage any side effects experienced previously. For booster shots, addressing vaccination fatigue and reinforcing the norm of continued compliance can be crucial, as using clear communication about the benefits of sustained immunity and the positive social proof of widespread booster uptake.44,45,47
The research team engaged with PHUs to understand how regional priorities differed due to variations in population density, demographics and health status, as well as differences in political and economic structures, healthcare systems and access to resources. During this step, the research team had to develop an understanding of the goals and needs of PHUs. We worked with PHUs to prioritize vaccination dose and communities using a prioritisation matrix (see Supplementary Material 1).
Two PHUs (Peel and Toronto) identified getting the first dose of the COVID-19 vaccine as their initial priority. The Peel PHU initially prioritised individuals between the ages of 30 and 49 who are members of Eastern European communities (e.g., Polish, Ukrainian, or Russian), and later broadened it to individuals from Eastern European heritage, ages 18 + and from any neighbourhood. The Toronto PHU prioritised individuals ages 18 + who are members of African, Black, and Caribbean communities from five neighbourhoods with the lowest rates of vaccination. Peel and Toronto also prioritised the third or “booster” dose later in the year. The Ottawa PHU prioritised the 3rd dose and individuals ages 18 + from five fifth-quintile socioeconomic status neighbourhoods (i.e., low-income).
3.1.3. Step 3 – Understanding community strengths and dynamics
The research team became acquainted and engaged with community leaders in Ottawa, Peel Region and Toronto to understand the strengths and dynamics of communities prioritized by PHUs. This was crucial because each neighborhood has a distinct public health and community infrastructure, leading to variations in healthcare behaviours and sociocultural practices. Furthermore, perceptions and attitudes towards vaccination varied markedly across communities, potentially influencing the engagement process. For instance, community reactions to the initial vaccine dose sometimes differed substantially from responses to subsequent booster doses. We conducted a detailed environmental scan to identify how the three PHUs promoted COVID-19 vaccination amongst key populations, classify existing strategies/resources used by these PHUs and identify the barriers and enablers to vaccination that these strategies are designed to address. This behavioural science-informed scan is reported in a separate paper.48
3.1.4. Steps 4 and 5 – Building relationships with each community, establishing the engagement framework and establishing partnerships with community members
The research team continued to build relationships with members from each community, following our planned approach to community engagement (see Fig. 2). This involved working with PHUs to identify community leaders or organizations who would then select members to form Community Advisory Groups (CAGs) for each city. Each CAG, comprising 5 to 10 members per PHU, collaborated with the team on key research activities, such as recruiting individuals for qualitative interviews. This formal partnership was essential for understanding unique neighborhood health dynamics, factors influencing healthcare behaviours, and varying attitudes towards COVID-19 vaccination.
In Ottawa, the process began with meetings at the Ottawa PHU, where key partners helped identify individuals from diverse community organizations, such as Community Resource Centres (CRCs) and Community Health Centres (CHCs). These community leaders, holding roles like Community Development Facilitator, Health Promoter, COVID-19 Coordinator and Community Capacity Coordinator, identified residents to form a CAG. From the residents approached, a group of six individuals agreed to form the Ottawa CAG, establishing a strong local connection.
In Toronto, it was necessary to adopt a different approach since the PHU did not offer to connect us with community organizations related to the priority group. We cold-called relevant organizations and had discussions with a Black researcher in Toronto, which allowed us to identify eight community leaders from Black, African and Caribbean communities with connections to various organizations (e.g., Jamaican Canadian Association, Grenada Cultural Association, Community Health Centres) interested in forming a CAG. We were unable to recruit residents to form a CAG like in Ottawa. Most community leaders in the Toronto CAG did not live within the five neighbourhoods, but were members of African, Black, and Caribbean communities, and some worked near the neighbourhoods.
In Peel, like in Ottawa, connections were established with community agencies and organizations through introductions from the PHU. The CAG included eight community residents primarily of younger age from Ukrainian, Polish and Bosnian backgrounds. Several community partners were employed as staff at various community organizations in Peel, working specifically with the communities with whom we sought to connect, and several had left Ukraine because of the Russo-Ukrainian War. Although exact educational backgrounds were not explicitly detailed, many had some tertiary education. Several newcomer members viewed their participation as a means for professional advancement in Canada, with some offering indispensable language support for interviews.
During this process, we finalized the engagement framework, outlining the principles, values, and practices that guided the development of trust and the partnership between academic researchers and community members in this project. The community engagement framework in OPTimise was based on the Patient Engagement In Research (PEIR) Framework developed by Hamilton and colleagues49 and on strategies identified by De Weger and colleagues (see Table 2).50 The PEIR Framework is an empirically based conceptual framework for effective PEIR founded on a patient perspective. The PEIR Framework includes eight key organizing themes: (1) procedural requirements, (2) convenience, (3) contributions, (4) team interaction, (5) research environment, (6) support, (7) feel valued, and (8) benefits. The guiding principles for community engagement in the OPTimise Platform were structured according to these themes. The main principles of the engagement framework were introduced during initial discussions with community leaders. Our framework emphasized mutual respect, shared decision-making, and measures to promote equitable partnerships, reduce power imbalances, and enhance the validity and relevance of research conducted.
Table 2
OPTimise Platform community engagement framework, based on work by Hamilton and colleagues49 and De Weger and colleagues.50
| Organizing themes | Guiding principles | Operationalization in OPTimise Platform |
| 1. Procedural requirements Procedural details involved in managing the inclusion of community members in a research project to ensure their experiences are rewarding and productive | Ensuring sufficient and diverse representation | • We worked to identify community members who can represent the perspectives and interests of the priority group |
| Clarifying roles | • From the onset, we discussed options for roles and tasks with community members to elicit their preferences and ensure they were comfortable with the level of engagement • These roles included: o Assisting with development of our recruitment and interview materials o Promoting the project and/or recruiting participants within their community o Interpreting the results of the interviews o Participating in the development of recommendations for Public Health Units |
| Offering compensation | • Each community leader/resident was offered a set compensation amount for assisting with the project and compensation for additional contributions; we consulted with them to offer this compensation in a way that worked best for them (e.g., cheque, electronic or mailed gift cards) |
| Using plain language | • We made sure the documents developed for community members were in plain language and, in some cases, translated in Arabic and French |
| 2. Convenience Importance of choice and accessibility, including sufficient time to engage, and the flexibility to choose how and when to contribute | Ensuring accessibility | • We scheduled meetings at times convenient to community members and offered alternative ways to contribute (e.g., email, telephone calls) • We ensured there was sufficient time for contributing during meetings • We circulated project and meeting materials (e.g., slide decks, recruitment posters) through different communication platforms (e.g., email, WhatsApp) and created a shared online folder for all materials |
| Ensuring flexibility | • We offered community members the opportunity to join the meeting through different means (e.g., joining Zoom by calling on telephone) • We clarified that we understand if not all meetings can be attended and offered individual meetings or telephone calls to cover missed material • We used different approaches to receive feedback (e.g., one on one conversations for feedback on interview guides) and encouraged the use of individuals’ preferred methods of communication (e.g., text, call, voice messages, email) |
| 3. Contributions Roles and tasks assumed by community members | Providing constructive feedback | • We provided regular, constructive feedback on the roles and tasks assumed by community members; we explained how their feedback was shaping the project |
| 4. Team interaction Importance of positive research team interaction | Identifying one person who can be contacted | • We identified one consistent “point” person on the research team whom community members could contact if they needed information or support |
| Ensuring a reciprocal relationship and positive social interactions | • We engaged regularly with community members not only in a ‘research’ context, but also socially through informal conversations • We emphasized the importance of mutual respect and trust |
| 5. Research environment Importance of having a positive and inclusive organizational/team culture that allows partners to feel comfortable and accepted as equal team members working together | Fostering a safe and trusting environment | • By clearly stating values of inclusiveness and respect from the onset, we fostered a safe and trusting environment enabling community members to provide input • The research team played a mediating role by encouraging honest feedback, actively listening and ensuring tensions could be openly discussed |
| Acknowledging power imbalances | • We acknowledged and addressed community member experiences of power imbalances between citizens and health care professionals • We had discussions about what community members brought to the table (e.g., feedback, comments, expertise, background) |
| 6. Support Financial support that covers engagement-related expenses and instructional support provided training to improve understanding of research language and processes | Reimbursing expenses related to project engagement | • In addition to compensating community members, we offered to reimburse any additional project engagement expenses (e.g., extra meetings) |
| Providing skills/instructional support | • At the first meeting, we explained research language and procedures • We integrated training into our meetings based on the needs of the specific group (e.g., information about the role of research ethics boards, how this impacts recruitment and interviews) • We offered additional on-demand instructional support, including in the individual’s first language when possible |
| 7. Feel valued Ensuring that community members feel equally important on the research team by demonstrating appropriate recognition and respect | Considering the community KUs’ motivations | • We explored the community members’ motivations for joining the project and considered how we can align the project with these motivations |
| Acknowledging contributions | • We reviewed community member’s contributions and successes at each meeting and stressed the importance of their expertise • We demonstrated their impact on the project (e.g., “What we heard/What we did” – see Table 3) |
| Creating quick and tangible wins | • We structured each meeting with community members to provide quick and tangible wins (e.g., collecting specific input about the interview guides that would help us move forward) |
| 8. Benefits Importance of community members to derive benefits from their engagement | Highlighting the benefits of engagement | • We highlighted the benefits of engagement for community members, including gaining confidence, knowledge and skills to communicate their perspective in a research team and learning about COVID-19 and vaccination • We communicated how the research team had benefitted from their engagement (e.g., personal growth, better understanding of complex issues and challenges faced by their communities) |
| Investing in citizens who are less often provided with opportunities to engage with researchers | • We provided engagement and learning opportunities to community members who felt they lacked the skills and confidence to engage • We offered to make them aware of further opportunities for engagement |
| Note. KU = knowledge user. |
3.1.5. Step 6 – Involving community members in the research process
From the onset, before partnerships were formalized and again during the first meeting of each CAG, we discussed options for the roles and tasks of community members to elicit their preferences and ensure that they were comfortable with their level of engagement. The tasks that members of CAGs could help us with included assisting with the development of our recruitment and interview materials, promoting the project and/or recruiting participants within their community, interpreting the analysis of the results of the qualitative interviews, reviewing and participating in the elaboration of recommendations for PHUs and supporting the dissemination of the results to their communities, the general public and other partners. Throughout the process, we produced short documents titled “What We Heard/What We Did” to summarize feedback received and explain what feedback we were able to incorporate and what we could not and why (see Table 3). This feedback mechanism proved useful for communicating scope of the project, the research process, and the requirements of the research ethics board. It also demonstrated to the CAGs that we were actively listening and valued their contributions.
Table 3
Example of a ‘What We Heard/What We Did’ document in the initial stage of the community engagement with the Ottawa CAG for recruitment posters.
| What we heard | What we did |
| Conversations is a better term than « interviews » | ✔ From now on, we will use conversation! Thank you! |
| The reading level is too high | ✔ We’ve decreased the reading level. |
| There is too much information | ✔ We’re reduced the content by about 30%. |
| Concerns with putting “vaccine” in the heading | You made a good point about people being tired to speaking about vaccination, but research projects must follow very strict rules from a “Research Ethics Board” (a group of people, including citizens, who make sure that people who participate in research are protected). We must state the purpose of the interview very clearly up front. |
| Concerns with putting 3rd dose/booster in the heading; people have lost track of what they have received so this could be confusing | We must be clear that it is for 3rd dose/booster. We can’t think of a simpler way of saying this. |
| Add a QR code on the poster | ✔ We will do this. |
| We like the subheadings (What do I have to do?… We’d like to hear your thoughts about…) | ✔ Glad to hear this. We’ve kept them in the new version. |
| Nice graphics, especially hands symbolizing collaboration | ✔ Thank you. We’ve kept the hands! |
| The poster needs to be more colourful, with bigger logos & pictures, and less “institutional” | ✔ Great advice! We have made the poster more colourful. |
| Make poster available in different languages (e.g., Arabic, French) | ✔ We will do this. |
Across sites, we used different methods of engaging community members in the research process. In Ottawa, our approach was shaped by the research readiness of our community members. Most were new Canadians and not familiar with research practices. To enable effective participation in the research process, each meeting included some type of training. Throughout our collaborative sessions, we discussed topics such as the importance of research ethics board requirements when co-creating recruitment documents or asking community members if they were interested in interviews. In later stages, our discussions were mostly focused on anecdotes and personal stories that reflected the community’s experiences and shaped our recommendations in a way that was close to the community.
In Toronto, where prioritized populations were African, Black, and Caribbean communities, our discussions reflected the community leaders’ expertise in their communities and were focused on intersectional issues and structures of power within society. They helped us understand the factors that influenced their community’s behaviours, what could potentially be done to repair relationships, and provided messaging that resonated with their communities. There were open and honest conversations about how unethical research and systemic racism continues to have profound repercussions on African, Black, and Caribbean communities’ relationships with the healthcare system, the government, and the scientific community. As health and social services professionals, community leaders shared how they interacted with people from those communities and what they heard about COVID-19 and vaccination. We were able to delve more deeply into behavioural science approaches as, in general, there were fewer barriers and differences related to language skills and overall health literacy.
The involvement of the Peel CAG was multifaceted, reflecting their cultural expertise, personal background and professional experience. To navigate the intricacies of the Eastern European community in Peel, members of the CAG offered valuable insights into the politics, history, and structures of power within various Eastern European countries. CAG meetings in Peel revealed substantial learnings about the cultural and political context, such as the influence of war in Ukraine and attitudes toward vaccination in other countries. Feedback from the CAG and community leaders emphasized a deeply rooted mistrust in government and its extensions, including research entities, due to historical political corruption in Eastern Europe. This necessitated building trust bridges, which the CAG aptly facilitated, highlighting the indispensable nature of their involvement in the research process. On a practical level, some CAG members actively participated in interviews by assisting with language interpretation, translating information ‘on-the-fly’, ensuring that the nuances were preserved.
With support from the CAGs, we conducted theory-informed interviews guided by the Theoretical Domains Framework (TDF) and explored barriers and enablers to COVID-19 vaccination along 14 domains (e.g., environmental context and resources; social influences; emotion; behavioural regulation).51,52 We conducted 22, 21, and 25 interviews in Ottawa, Peel and Toronto, respectively. These included 14 interviews with people who were not vaccinated, three with people who had the first dose, and 36 with people who had the second dose. Additionally, we interviewed 15 people across all three locations with people who had 3 or more doses. Despite efforts to achieve more balanced samples, more women than men participated in interviews.
3.1.6. Step 7 – Feeding back and interpreting research findings
Once the qualitative interviews with members of each community were completed, additional meetings with CAGs were held to discuss and interpret findings. We used ‘personas’, who represented fictitious individuals in each community, as a way of presenting the themes and perspectives derived from the qualitative interviews (see Fig. 3). We created between three and four personas per community. The CAGs recognized that the fictitious personas represented familiar perspectives of their neighbours and peers, which facilitated rich observations of what types of strategies could resonate with these personas.
When it was time to develop recommendations for PHUs based on the analysis of the results of qualitative interviews, we produced ‘What We Heard’ documents to present a summary of the feedback from each CAG from the previous meeting regarding each potential recommendation (see Table 4).
Table 4
Example of a ‘What We Heard’ document in the latter stage of the community engagement process with the Toronto CAG for recommendations to the Toronto PHU (details regarding each recommendation added to clarify recommendations).
| Recommendation idea | What we heard |
| Use windows of opportunity to start conversations • Use March 11, 2023 (3rd anniversary of pandemic) to launch a new campaign about what we have learned about COVID and the vaccines | • Not sure if people will be receptive to a rebranding campaign • The word “anniversary” implies celebration: COVID is not something to celebrate |
| Empower trusted sources • Make sure people are aware of their important role in affecting the COVID-19 vaccination decisions that their patients, congregation, family, friends, and peers make | • It’s true that faith leaders have a lot of influence • Reach leaders through the higher-ups in the church system (the top dogs) • Strategically choose churches for campaigns • Include Black health professionals and experts |
| Roll with resistance • Empower (through offers to support training) trusted sources to draw from the principles of motivational communication to keep the door open by “rolling with resistance” where the goals are to avoid defensiveness and encourage people see different perspectives | • This one is great • The non-judgmental piece is important • Respect people's right to make their own decisions |
| Clarify key information • Acknowledge that the messaging around COVID has been mixed/unclear, and clarify that it is less about how many doses you had and more about having a dose recently, so that your body is ready to fight COVID | • Good information, can accompany with visuals • Great use of language to explain things in a new way (immune system part) • Need to clarify what different variants mean |
| Use stories alongside statistics • Identify examples from within communities where people have changed their minds about the vaccine to amplify; stories from local community leaders, community ambassadors and relatable "regular people” | • Use videos, audio, people learn differently • In-person also very important e.g., wellness clinics • Could be playing on the screen at wellness clinics etc., people will watch while they’re waiting around |
3.2. Lessons Learnt
3.2.1. One Size Doesn’t Fit All: Tailoring Community Engagement
Early in the engagement process, the research team recognized the necessity for tailored approaches for each community, considering the broader sociopolitical context, the polarization of views regarding COVID-19, the geographic distance of the research team to prioritised communities, and the distinct needs and cultural backgrounds of the communities. While the original strategy involved partnering with PHUs to identify community leaders or organizations, who would in turn help us select local residents to form CAGs for collaborative research in each city, this method proved unfeasible across all locations. Across all communities and at every step of the way, we had to consider the implications of working on a topic that became highly politicized with the potential for generating strong emotional reactions, influencing who ended up wanting to collaborate on this project. Therefore, the engagement process was tailored to each community, grounded in a fundamental respect for their diverse perspectives and needs.
In Ottawa, we implemented the approach the research team had originally envisioned. Engagement with key partners at the Ottawa PHU resulted in the identification of individuals from various community organizations serving the target neighbourhoods. These individuals further identified community residents interested in forming a CAG. Our research team’s citizen partner led Ottawa’s community engagement, utilizing skills as a second language teacher and a person who is experienced in bridging the gap between the public and researchers. This intermediary role between the researchers and the community leaders seemingly helped mitigate barriers to engaging in research (e.g., accessible language, understanding of research systems, tokenism) that people from equity-denied groups might face. Conversely, in Toronto, the PHU did not offer to connect us with community organizations related to the priority group. We independently identified and contacted local organizations to form a Toronto CAG. Despite extensive discussions with community leaders and several unsuccessful attempts at recruiting residents, we adapted our strategy due to historical mistrust and injustices, which were intensified by COVID-19. Consequently, we decided to form the CAG with community leaders. In Peel Region, the PHU prioritized individuals from Eastern European communities. However, this initiative intersected with the geopolitical upheaval following Russia's invasion of Ukraine in February 2022, leading to a pause in community engagement efforts. A breakthrough came in spring 2023 with introductions from the Peel PHU to community organizations, as was the case in Ottawa. This led to a successful Zoom presentation to about 45 organizations, which, along with PHU connections, enabled the formation of a Peel CAG with community residents. The experiences in these regions underscore the importance of flexibility and cultural sensitivity in community engagement, particularly in diverse and dynamic sociopolitical contexts.
3.2.2. Navigating Diverse Public Health Unit Priorities
Box 1. Guiding questions when developing collaborations between behavioural scientists and public health units.
- What are the specific public health challenges faced by Public Health Units (PHUs), and how do these translate to their goals and needs?
- How can applied behavioural science contribute to addressing these goals and needs (e.g., exploring barriers to vaccination, designing strategies to promote vaccination)?
- What are the metrics of success for PHUs, and how can these be aligned with behavioural research findings?
- How can the collaboration between PHUs and behavioural scientists be structured to ensure mutual benefit?
- How can the partnership between PHUs and behavioural scientists remain flexible to adapt to new public health emergencies or changes in community health profiles?
- What communication strategies can be employed to effectively convey the findings and benefits of behavioural science interventions to diverse stakeholders?
- What are the best practices to build capacity within PHU staff in the principles and applications of behavioural science to enhance in-house expertise?
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This process can generate tensions, therefore efficient, transparent communication is key to ensuring balance between the respective interests of each group. In the OPTimise Platform, this required not only a clear understanding of each party’s objectives but also a commitment to open dialogue and collaboration, ensuring that both the practical needs of the PHUs and the scientific goals of the researchers were adequately addressed and harmonized.
The prioritization discussions within the project revealed differing preferences among the PHUs for the types of support they needed. While one PHU was seeking assistance in reaching out to communities where establishing connections had proven challenging, the other two PHUs were more interested in working with communities where they had existing relationships but still faced low vaccine uptake rates. Furthermore, a significant aspect that came up during the prioritization process was defining what constituted a community in the context of the project. We adopted a broad definition of community, recognizing that communities may be arrayed along a spectrum of cohesiveness, with a different set of characteristics (e.g., common culture and traditions, canon of knowledge, and shared history; health-related common culture; legitimate political authority; representative group/individuals; mechanism for priority setting in health care; geographic localization; common economy/shared resources; communication network; self-identification as community).53 Consequently, our definition broadened to include not just geographic proximity but also shared identities, interests, cultural practices, and social connections. One PHU expressed a desire to focus on communities with low socio-economic status (SES), while the other PHUs preferred to focus on specific cultural population groups, acknowledging the unique challenges and opportunities in enhancing vaccine uptake within these communities. These distinct priorities shaped our approach to community engagement, tailoring it to the specific vaccination goals and the communities prioritized by each PHU.
3.2.3. Building Trust for Effective Community Engagement
The trust-building process in this study was crucial for effective community engagement and research partnerships, especially with communities impacted by discrimination, racism, and systemic inequities. This process was influenced by historical trauma, pre-existing mistrust towards researchers, healthcare professionals, and government, community governance, resources and challenges posed by COVID-19 and geographic distances. The team identified five key trust-building mechanisms based on their experience: (1) getting acquainted; (2) ensuring cultural and linguistic competence of the research team; (3) working out differences and resolving conflicts; (4) acknowledging the validity of mistrust and damaged relationships based on past experiences; and (5) addressing ethical considerations and ensuring reciprocity.
Getting acquainted was a crucial trust-building mechanism as it allowed for the establishment of mutual respect, understanding and shared goals between researchers and community members. This was achieved through the research team learning about the communities, engaging in active listening and demonstrating a genuine interest in the community's concerns and perspectives during meetings with community leaders.
Ensuring the cultural and linguistic competence of the research team was also fundamental since we engaged with people from diverse sociocultural backgrounds who spoke different languages and had varying levels of health and research literacy. Although the research team was prepared to do this, it was not until the PHUs were identified and the prioritised communities were chosen that we were able to address the cultural and linguistic competence of our team. Working with different groups from widely different sociocultural backgrounds required the team to be especially conscious of what they knew and also what they did not know, and to seek advice and to secure external support when required. We recruited team members fluent in different languages (e.g., Arabic, French, Ukrainian) to help support community engagement meetings and conduct the qualitative semi-structured interviews to identify barriers and enablers to vaccination uptake in the prioritised communities. Throughout the project, we consulted with community members to ensure culturally appropriate activities (e.g., acknowledging Black History Month, sensitivity in relation to the Russo-Ukrainian War).
Working out differences and resolving conflicts helped build and maintain trust among community members at different levels. This involved acknowledging and addressing power imbalances, communicating openly and honestly and using a collaborative problem-solving approach. For example, during the cold-calling process in Toronto we were confronted with questions from several intermediaries inquiring why, if we wanted to work with people from Black, African, and Caribbean communities, we did not have individuals from these communities represented on the research team. We carefully explained that the OPTimise Platform was designed to be agile and flexible in working with a wide range of communities, while recognising that indeed this was a limitation in the composition of our team and why we sought to partner. Thus, our plan was to engage members of the specific communities we would be working with before embarking on research activities to ensure local representation.
A central trust-building mechanism during our CAG meetings was acknowledging the validity of mistrust and damaged relationships based on past experiences. Acknowledging and addressing historical and systemic injustices was central to the community engagement process. Discussions with Toronto community leaders led us to understand that not all of them felt comfortable referring community residents to us to form a CAG due to the highly politicized and polarized nature of COVID-19, as well as historical mistrust in healthcare professionals and decision-makers. There were people sympathetic to anti-vaccine sentiments in the CAG; however, the research team and the CAG were able to engage in constructive discussions which respected the different perspectives. During our meetings with community leaders from Black, African and Caribbean communities, we discussed the historical and systemic injustices that have contributed to mistrust (e.g., the Tuskegee syphilis experiment) and worked to understand concerns and experiences. We learned a great deal about the impact of mandates (e.g., mandatory vaccination, travel restrictions) on communities and how it affected community relationships with health professionals.
A final trust-building mechanism, operationalized mainly when partnerships were established and the Ottawa, Peel and Toronto CAGs were formed, was addressing ethical considerations and ensuring reciprocity. Many ethical issues emerged that needed to be addressed when working with these equity-denied communities. These included achieving a true “community-driven” agenda, addressing insider-outsider tensions, racism, limitations of “participation,” as well as issues involving the sharing, ownership and use of findings.36,54