Practical Tools for Ethical Engagement in Health Research, Part III

The Rules of Partnerships

By Ogai Sherzoi

Historically, research involving communities has not engaged and involved the community partners in an active and meaningful way (just one example are the nutrition experiments conducted in residential schools in the 40s and 50s [1]). As a result, many communities in our society feel that research has been conducted on them rather than with them. Communities are calling for new approaches in which they are equal participants in the research decision-making process, and where research conducted has a direct benefit for people involved. One example includes the slogan rooted in the disability rights movement NOTHING ABOUT US WITHOUT US.

Today, patient and public engagement in health research is slowly changing direction to a research paradigm that actively involves target communities as partners, exemplified by the Canadian Institutes for Health Research’s Strategy for Patient-Oriented Research (SPOR). To ensure history does not repeat itself and continue on the path of improving health and well-being of all Canadians, it is important that we talk about ethics, power dynamics, and rules of partnership. The ideas, questions, and concepts discussed in this blog series are adopted from Karen Hacker’s Community-based participatory research [2].

Missed part one? Read it here.
Missed part two? Read it here.

Previous posts in this three-part series have focused on ethical concerns and power imbalances in community-based research, and have offered some practical advice and questions for researchers to answer when considering engaging with communities. In this post, we provide some key questions (for both researchers and communities) that need to be answered to gauge readiness for community-based research. For example, community members need to reflect if they have the time to participate without sacrificing other responsibilities; also find out if they will be provided with appropriate financial resources to support their work from the researcher, and so on. The following questions have been adapted from Karen Hacker’s Community-based participatory research [1].

Questions for Community Partners to Ask Researchers Before Engagement [1]

• What kind of partnership does the research have in mind? Is it partnership and collaborative or as a participant?
• How and who will have the decision making power?
• What is the aim of the research?
• Who is the target population of interest and why?
• How will the research be funded?
• What will be my role in the project?
• Will the time be compensated?
• Who will own the data? What will happen to the data after the research project is complete?
• How will the research benefit the community (capacity building, policy, programming, etc.)?
• What is the dissemination plan for the research?

Questions for Community Partners to Reflect on Before Engaging [1]

• Does this research address the important concerns relevant to my community?
• How does the research aim fit with the community’s values and culture?
• What are the conflicting priorities?
• Will the results lead to action that will help my community?

Questions for Researchers to Reflect on Before Engaging Communities [1]

• Do I have connections to the community?
• Do I know enough about the particular community, its makeup, assets, challenges, cultural norms, and history?
• Do I have the time to invest in and developing a relationship?
• Do I have a good understanding of my own cultural beliefs, values, and privileges?

Establishing Roles [1]

Once relationships are built and partnerships are established, the next step is to outline roles and responsibilities. Some researchers and community partner might choose to clarify roles and responsibilities by created a memorandum of understanding (MOU). The MOU can be used to outline expectations, which needs a consensus from the entire group. It’s important to be transparent from the beginning order to avoid future disagreements. Here are some areas that you might need to think about when creating a MOU:

• Overview of the project
• Description of each member responsibilities
• Deliverables and or milestones
• Budget — who will hold the funds
• Timeline
• Dissemination process and requirements

Maintaining Partnerships [1]

As the relationships move forward and progress through the research process, there needs to be a continuous transparency, open and honest communication, and engagement. There will always be challenges, disagreements, and concerns that will arise from the community that will need to be addressed. It is important that we are trauma informed and ensure that we are creating safe spaces for those conversations to take place. As a researcher it is important to listen to all voices and perspectives to ensure the outputs are meaningful, relevant, and useful to communities and society in general.

What other ideas do you have when it comes to rules of partnership? Let us know in the comments or on Twitter at @KnowledgeNudge.

References

1. Hacker K. Community-based participatory research. Thousand Oaks, CA: SAGE Publishing, 2013.

About the Author

Ogai Sherzoi is a knowledge broker for the Knowledge Translation platform at the George & Fay Yee Centre for Healthcare Innovation (CHI).