Community Based Research

Written by Mia Cooper

Last week, I had the privilege of attending the annual RI Community Health Worker Conference. It was inspiring  to watch such kind and hardworking minds come together to learn and discuss ways to improve community health in our small state. Amongst the tables of information and an itinerary full of informative speakers were dedicated public health professionals who welcomed questions and conversations with open arms. I had the pleasure of sitting in on a panel of five intelligent women who have worked in community health research in some capacity. The panel was put on by Advance Rhode Island, Clinical and Traditional Research and focused on how to integrate the community into community-based research. 

The conversation began with discussing the importance of involving the community in research and focusing on their needs. The goal of the panel was to discuss ways that the community can be involved in research in all forms. We discussed how members of a community have just as much, if not more, valuable input as individuals conducting the work. I admired the way the panelists discussed this, providing examples on how community health workers, members of the community, and research assistants can work in collaboration. Community research is really based on those who know that better than the individuals who have experience living and working there. 

This prompted discussion amongst audience members about important considerations to take when working in a community. One individual noted how speaking the language does not equate to knowing the culture, an important distinction when it comes to working in this capacity. I reflected on the importance of listening, learning, and being okay with being wrong. I enjoyed listening to the perspectives and experiences of the audience members when working with particular communities. 

A funny reflective moment was when some of the panelists were using research acronyms to describe steps in an academic process . Though some members of the audience were familiar with acronyms, such as IRB (institutional review board), one individual spoke up, saying, “I think I will speak for a lot of us in saying I need some help with knowing what IRB means.” This allowed me to reflect on how much of our work as researchers or community health workers is coded to the people we are helping. Even though I knew the definition for IRB, I was earlier thrown off by a reference to DCYF (Department for Child, Youth, and Families). This exemplifies how, depending on the circle we are working in, we have different realms of knowledge and further reaffirms the importance of collaborative work. 

I really enjoyed listening to one of the panelists speak about her work with participatory research. This involved completing qualitative interviews with community health workers and allowing them to be a part of the coding process as well. This not only allowed CHWs the chance to learn how to code, but also gave better insight into the data, as they may have pulled out information that would not have been spotted by a research assistant. I thought this was an insightful innovation that increases our understanding as well as exercises the practice of being more intentional listeners. Involving members of the community allows the generated data to reflect how the individuals living there feel, rather than a research assistant who is coming in and out for the purpose of data collection. I appreciated the anecdotes from the panelists about occasions in which they fostered this collaboration or explained to those outside the community the cultural importance of a specific place, radio station or even a specific phrase. 

At Wheelhouse, we work to decode medical information for our clients, making their bills easier for them to digest. Our work is all about helping people understand and afford healthcare, but we can't do that without knowing what people don’t know. Collaboration with our clients is part of the reason we can do what we do. When we understand what our clients need, we can better tailor our work to meet it. This type of work is unique to organizations like ours and exemplifies the importance of human connection when it comes to making a difference.

The panel ended with a reminder to be aware of our differences and open to learning. At this time, more than ever, it is important to be open and understanding of our differences as it equates to a deep strength, not an overarching weakness. We ended on the importance of meeting people where they are. We discussed how this will encourage people to see the true value of their work and recognize their worth in making a difference in their own community. I feel very fortunate to have been part of this conversation. I know it will make me a better researcher, advocate, and community member.