Meaningful community collaboration in research, as we know it today, started during the HIV/AIDS pandemic as a grassroots movement to gain an equal voice at the table of scientific discovery. Today, participatory health research, community advisory boards, and knowledge translation are common buzzwords that look attractive to grant reviewers and journal editors. However, community partnerships cannot be reduced to mere tokenism or committee meetings. Meaningful community engagement involves lasting partnerships, a willingness to consider differing opinions, and elevation of lived experience to the level of academic credentials. It requires authentic collaboration at all stages, from generating research questions to translating findings into action, including community members in leading roles, building capacity, and providing ownership. Importantly, it is not a unidirectional process, but an interactive effort to embrace community wisdom, values, and priorities. Now, in the context of another infectious disease pandemic, lessons learned from engagement with the HIV community are more relevant than ever.

Barriers to community collaboration

Connections with community members are often initiated at conferences or local gatherings. When such events are canceled or altered, it can be challenging to establish these crucial relationships. Even when these connections have already been made, barriers to maintaining collaborations abound. For instance, research teams may use a kitchen-table style of consultation, which begins with a shared meal, opening ceremonies such as gifting tobacco ties or smudging when collaborating with Indigenous partners, and respectful conversation where each member literally has an equal seat at the table. This format creates a physical space that exemplifies equity and dissolves traditional hierarchies. With physical distancing mandates during a pandemic, this becomes seemingly impossible.

When community members are hired as formal peer researchers, rigorous training is often undertaken. Once again, this typically takes place in person, where learners can discuss complex research principles and share personal challenges and triumphs. To move these essential workshops to virtual platforms may exclude community members with limited resources. Equally challenging is hosting vibrant and animated knowledge translation events. Many of us can relate to the awkwardness of trying to ask a question during an online webinar, only to be cut off when another person unwittingly starts speaking. These barriers are formidable and may lead researchers to postpone community collaborations. We aim to provide practicable methods to address these challenges [see Box].

How to creatively collaborate with community members

Nurturing meaningful relationships

An essential component of community collaboration is allowing time and space to nurture connections between researchers and community partners; this includes having informal, agenda-less conversations. This can be achieved by hosting virtual meetings that create space for introductions, icebreakers, and collaborative games. Discussion-based meetings, with reflection activities and polls, serve to make gatherings more engaging and inclusive, reinforcing that everyone has something to learn from one another. Plainly stated, researchers acknowledge that they can and would like to learn from the strengths that community members bring. Asking community partners if they would like to lead any online sessions further empowers them to take on larger or other roles. A who’s who document describing the roles of all team members (investigators, clinicians, research staff, students, community partners, etc.) can help community partners become more familiar with the team, feel included, and know whom to approach with questions. This practice is important whether meetings are held in person or online. These efforts empower community partners and amplify capacity in all members of a research team.

Addressing barriers to collaboration

It is imperative to understand the unique barriers to participation that each partner may have and to work collaboratively to address them. Barriers could include a lack of access to technology, shifting schedules, or child care needs. A respectful, private conversation with each community partner can elucidate their specific needs and open the door for dialogue as to how to navigate them. For instance, supporting partners to overcome technological barriers could include providing computers, Internet access, cellular data, webcams, etc.; funding these purchases when needed; and guiding partners in how to use them. Another critical aspect of honoring community partners’ importance and mitigating potential financial barriers is through remuneration. Community partners are often reimbursed for travel costs, but even if they are participating via videoconference, it is important to value and compensate their time and knowledge. This can be achieved by setting aside funding in grants to allow time, resources, and remuneration for community partners.

Learning from existing community leaders

Existing leaders in the community, such as with Indigenous Elders or leaders of community organizations, are valuable resources. They may have strategies in place that work well in their communities, so it is important to listen, learn, and incorporate their feedback. Additionally, when certain research activities are put on hold, it creates an opportunity to check in with community leaders to ask if there are other research topics they would like to explore. This offers an opportunity for meaningful community-based research where academics, clinicians, and community members develop research projects together from the beginning, stemming from the needs of the community.

Translating knowledge

Knowledge translation and exchange is a critical component of research that brings study findings back to the community. Virtual meetings can be held with community members to discuss how results should be interpreted and shared. Online resources, such as web-based pamphlets and fact sheets, can be created together to disseminate results on the websites of clinics and other organizations. Hosting discussions, such as community forums, focus groups, or sharing circles, could be done virtually or in outdoor spaces. These gatherings create spaces for community members to learn about results, ask questions, and provide feedback. Community partners can be invited to participate in writing abstracts and manuscripts, with the opportunity to learn more about the writing process. Here, it is important to recognize once again that community leaders have much to teach academics about the respectful and intentional use of language. This exemplifies meaningful collaboration through to the end of a study.

Conclusion

Researchers can interweave community partnership, equity, and respect into research practice. Community engagement leads to more equitable and applicable research—the community knows best what the community needs. We have learned the immense benefit of meaningful community collaboration from HIV research; the current pandemic provides a rich opportunity to grow and learn with our community partners how to navigate the challenges of working together, but from a distance.

Competing interests

None declared.

Acknowledgments

Authors respectfully acknowledge the ancestral, traditional, unceded territory of all the Coast Salish Peoples, their lands and waters, including the territories of the Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh), xʷməθkwəy̓əm (Musqueam), and Skwxwú7mesh (Squamish) Nations where we have learned, worked, and collaborated. They would like to honor, thank, and acknowledge all community members and researchers who are leading the way in community-based research. To their mentors and collaborators, they honor and thank you for everything they have learned from you, and they look forward to continuing your journey together.

Suggested reading

Carter A, Greene S, Nicholson V, et al. Breaking the glass ceiling: Increasing the meaningful involvement of women living with HIV/AIDS (MIWA) in the design and delivery of HIV/AIDS services. Health Care Women Int 2015;36:936-964.

Kaida A, Carter A, Nicholson V, et al. Hiring, training, and supporting peer research associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV. Harm Reduct J 2019;16:47.

Morolake O, Stephens D, Welbourn A. Greater involvement of people living with HIV in health care. J Int AIDS Soc 2009;12:4.

Schnarch B. Ownership, control, access, and possession (OCAP) or self-determination applied to research: A critical analysis of contemporary First Nations research and some options for First Nations communities. Int J Indigenous Health 2004;1:80-95.

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This article has been peer reviewed.

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Ms Swann is an MD/PhD student in the Department of Experimental Medicine at the University of British Columbia. Ms Campbell is a research coordinator at Oak Tree Clinic. Ms Nicholson is an Indigenous Elder in the Faculty of Health Sciences at Simon Fraser University. Dr Murray is a clinician-scientist at Oak Tree Clinic and a clinical associate professor in the Division of Infectious Diseases at the University of British Columbia.