Community-Led Research

I haven’t always called myself a community-based researcher. My first step in this direction didn’t come until I was chasing funding for a project. This project started as a question about how to help people better self-manage diabetes. We know diabetes self-management works if patients can get the training and implement what they learn. But getting the training is complicated, especially in rural areas, and the amount of behavior change post training varies greatly. So, my question became how do we close that gap?

I was also heavily influenced at the time by PARIHS framework (one of the original versions) which put forward that an intervention could only be implemented if there was good evidence for it, there was buy-in from end users, and it has help to move the process along. We had good evidence for self-management practices, I figured we could find or test a facilitator, but we didn’t really have a good sense of what the patients wanted in diabetes self-management.

I stumbled upon the Eugene Washington PCORI Engagement Award a capacity building grant that provided funding to gather people to discuss issues and concerns with an eye towards developing research questions that could then be investigated. As with many grant applications I didn’t get it in the first go. Fortunately, the second time was the charm!

The PaRTICIpate Project included people who have diabetes in the process of developing research questions to gain insights into diabetes management. Over the course of 14 meetings, taking place over two years, we recruited nearly 90 patients, healthcare providers, and various other stakeholders from three communities spanning across northern Mississippi. We wrote 17 good patient-centered and written research questions that have formed the foundation of several subsequent projects. But at the end of that project, I still didn’t think of myself as a community-based researcher.

From PaRTICIpate I moved on to the Flagship Constellation Initiative, wherein faculty members got together to solve BIG problems. Here I was one of the founding members of the Community Wellbeing Constellation, which worked alongside communities to improve wellbeing through the arts, humanities, and sciences. As part of this project, we helped to fund numerous projects, hosted a podcast, and launched my first research center.

The Community First Research Center for Wellbeing and Creative Achievement (CREW) grew out of a recognition that despite a desire to work alongside communities, academic researchers still held all the power in a research relationship. Academics received the training, know the lingo, often hold the grants, have dedicated time for research, and generally get to go back home to the university when the project is done. Community members often engage is research and community building projects over and above their regular and full-time jobs, haven’t received extensive research training, are looking to solve a problem that is urgent to them, and are stuck living with the consequences of poorly implemented studies at the end of projects. CREW is intended to level that playing field by placing the community at the center of the research process, providing training in research design, helping write research questions, and then connecting communities with academic resources to answer those questions.

It wasn’t until I co-founded CREW that my self-image began to grow to include the descriptor “community-based researcher”.  But I still didn’t have comfortable way to talk about what I was doing working with communities. Often people assumed it was a “service” obligation, not a serious research endeavor. It wasn’t until I came across this book, “Community-Led Research: Walking new pathways together” (like barely a month ago) that I found a comfortable way to describe my work. I do community-led research.

If you’re interested I would suggest starting with the introduction, which offers a nice overview of this work and what you can expect from it. I would like to draw your attention specifically to the section labelled “Community-Led Research: limitations and challenges”, but not to put you off (this is my research magic after all).

Rather I would like for us to have a conversation about what the purpose of our research is. Why do we do it? What are we trying to accomplish? Do our day-to-day activities align with that “why”? If you could change one thing about your day-to-day work that would get you closer to your “why” what would that be? Candidly there are times I certainly get far away from my why. Sometimes that’s unavoidable. Sometimes I can see my own decisions leading me away. That’s always an uncomfortable realization. So, let’s talk about it.  

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