Within health care, there is growing interest in understanding how to more effectively work with communities to identify their health priorities and incorporate consumer voice into program design. Community-based participatory research (CBPR) — a collaborative research approach that equitably involves all partners in the process of recognizing their unique knowledge — is one such strategy to meaningfully engage consumers’ perspectives.
In Minneapolis, Minnesota, Kate Diaz Vickery, MD, MSc, a primary care doctor and researcher, and Susan Gust, a community engagement consultant, have been using community-based participatory research to initiate conversations about reimagining health through local connections since 2015. Vickery and Gust, both of whom are affiliated with Hennepin Healthcare, a long-time member of CHCS’ Complex Care Innovation Lab and one of two Robert Wood Johnson Foundation-funded Community Partnership Pilot sites, recently spoke with CHCS to share their experiences with implementing this approach and provide lessons for other organizations.
Q: What are key elements of community-based participatory research and how does this approach differ from traditional research inquiry?
“Knowledge is not created by researchers, but rather co-created by the group of community members and researchers.” – Kate Vickery
K. Vickery: Community-based participatory research (CBPR) involves partnerships between community members and researchers in all aspects of the research process. It allows researchers to engage with communities to define what health means to them, and together decide how to improve it. Community voice is present at every stage of the process, including defining the research questions, deciding who should participate, determining how to collect data, and figuring out how to share findings. Knowledge is not created by researchers, but rather co-created by the group of community members and researchers.
S. Gust: The explicit purpose of CBPR is to effect change. In the participatory process of doing research, change is actually happening along the way, too. The emphasis is on having different groups come together to share their perspectives from different knowledge systems. Most importantly, it’s about building trust and mutual respect between researchers and the community and creating an environment that can support this participatory work in co-creating new knowledge.
Q: What are some of the benefits to using CBPR over a more traditional research approach?
S. Gust: We are all learning, all contributing, and mutually defining benefits for the community and the patient and recognizing the ways that institutions need to change to support an equitable research process. In a traditional research approach, only one health issue can be examined at a time in a much more narrow approach, while in CBPR, that same issue can be examined through multiple perspectives or lenses. Social or systemic structures can also be identified that may also be impacting that specific health issue. Simultaneously, the equitable approach to conducting the research can also positively impact a community.
K. Vickery: A lot of the community engagement processes that we traditionally do in health care are actually very one-sided — the health care system benefits, and the community’s voice is used to check a box. The goal of CBPR is to work together in a committed way, and over time, to move the needle on the change we want to see.
Q: What are specific strategies for effectively engaging individuals in health care research?
“Participants then understand that their self-interest is just as important as somebody else’s and that is how you can start to work toward mutual benefit.” – Susan Gust
K. Vickery: We use a number of practical strategies, including:
- Being transparent about goals and processes;
- Collectively establishing ground rules and a decision-making process;
- Offering one-on-one meetings to talk about the purpose of the project, time commitments, and what we want to accomplish together;
- Meeting at times and places that are convenient to and rooted in the community, not necessarily researchers; and
- Ensuring that icebreakers are something everyone around the table can comfortably answer.
We also de-emphasize professional credentials, which are really common in the health care field. You don’t want to hide titles, but they shouldn’t be front and center on all of your documents and meeting materials. All these things help show the community that CBPR is a different process from ones they may have been exposed to before, and they make a difference in the quality of information you hear and in establishing equitable input.
S. Gust: One of the best practices that I have found when working with groups is identifying self-interest. CBPR allows this to be part of the process, and lets participants better understand each individual’s self-interest for being part of the group, what the communities’ self-interest is in participating, and the research institutions’ self-interest. Self-interest is something we tend to shy away from because it sounds selfish, but it’s actually the thing that allows us to show up and be there and stay committed. Participants then understand that their self-interest is just as important as somebody else’s and that is how you can start to work toward mutual benefit.
Q: How do you navigate the potential differences between the health care system’s /research project’s objectives and the wishes of the community?
“You will most likely have to acknowledge that some water under the bridge needs to be worked through — that past actions of research institutions and traditional ways of doing research need to be addressed and recognized — before you can journey together in an effective partnership.” – Kate Vickery
S. Gust: Some of the most effective partnerships that I have seen clearly state the “why” of the work and form their center around that and not the research objectives. In the authentic practice of CBPR the research is not at the center. Instead, the research provides the vehicle to come together.
Sometimes there is alignment from the beginning, which makes it easier to proceed in the work together and hit fewer bumps in the road — the community lifts an issue up, and together you go off and find money to support a research project. Other times, the project needs to enlarge in scope to incorporate the community’s interest and maybe even seek other funding sources. More often, it’s recognizing the dissonance that exists in the process that will provide the fodder for strengthening the collaboration. Recognizing that the process is equally important as the project means that the research outcomes will be deeper and the process can lead to other equitable changes.
K. Vickery: I think the take-home message is to just be honest. More often than not people are really tolerant, especially if your intentions are good and you’re honest and transparent about what you’re trying to accomplish and where you hope to go. You will most likely have to acknowledge that some water under the bridge needs to be worked through — that past actions of research institutions and traditional ways of doing research need to be addressed and recognized — before you can journey together in an effective partnership.
The easiest way to avoid major differences in the research is to engage communities as the objectives are being defined. But even under ideal circumstances of collaboration, differences in goals and objectives can exist. The point is not to prevent this, but to acknowledge it and bring transparency to the project. Researchers need to be clear about the scope and timeline of a given project. Translating research findings into community programs may not always be feasible on a particular grant, but perhaps it is something the researcher could pursue with the community in future grants. If not, what can the researcher do to ensure the findings have relevance to the local community. Having this honest, open conversation early and often is a key part of establishing trust and acknowledging challenges.
Q: What advice would you give to health care organizations seeking to authentically engage with a community?
K. Vickery: Look at your local community and identify which aligned leaders or community members can be a resource to you, and then challenge yourself not to stop when you have engaged them. It’s easy to email the leaders of local nonprofits and call that “engaging with the community,” but I would challenge people to find those partners and then ask them to help find and create primary relationships with people in the community.