Thoughts on centering communities in research

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One of ICH’s core service areas is applied research, and I have been thinking about how our work contributes to health equity and how we can do more to create value for the communities that participate in our research. Traditionally, researchers set out to seek information and knowledge from communities in hopes of benefitting them, but do we usually just benefit ourselves? I don’t mean to be cynical because many researchers do set out on a project with good intentions, but let’s be real. I often wonder how in-sync researchers are with the communities they hope to study. How often we value degrees, licensing, and number of published pieces over lived experiences and on-the-ground knowledge. Research is often a top-down system. How often do we see a direct benefit to the community we do research in? How often do we share back findings in a way that is meaningful and actionable? How often do we truly and genuinely incorporate community perspectives into our plans and give communities the power to make changes and disagree with us? And as we seek to use participatory methods, what are the benefits and challenges of having researchers who are also part of the communities being studied?

These questions have been bouncing in my head the last few months. In one particular research project that I’m currently collecting data for, a COVID-19 qualitative study, we are talking to Hispanic and Spanish-speaking patients who were hospitalized following a COVID-19 diagnosis to understand how they got to that point. Hospital records showed that Hispanic and Spanish speaking patients were three times more likely to be hospitalized than other ethnic/language groups in our area. While we are early in our data collection phase, a few themes have already emerged, including that many people didn’t contact their providers early enough due to fears and insecurities about the health system. Other themes have revolved around the social determinants of health, including cramped housing conditions and exposure through work and public transportation.

While I find this study incredibly interesting and informative, I’ve been grappling with some uncomfortable sentiments in my role as a researcher. For example, I identify personally with the community being studied. I am Hispanic, I am an immigrant, I grew up in a neighborhood where some of our participants live, and I’ve faced many of the cultural and socioeconomic “risk factors” that we identify in our hypothesis. Coming into it, I believed that some of my background and lived experience would be beneficial, and while I still do, I am now realizing that the stories I hear through this work can trigger unexpected feelings and reactions for me because of my connection to the community. I am mulling over this and how ICH can learn from this experience as we take on more participatory research projects. In the meantime, I am glad to have an incredible team of people to lean on and the belief that my lived experiences and perspectives will only make the results richer and more relevant to the community.

The results of this study will ultimately be fed back to the health care system that treats these patients in hopes of identifying extra supports and future interventions. I do still think this work is very important and is helping fill in the picture of the causes and effects of COVID-19 in this community, and I hope that this will result in direct benefits to the populations of focus. And as we move forward with these types of applied research projects, I hope we can find ways to share back what we learn with community organizations and community members, engage them in decision-making, and empower them to use the information for their own benefit as they see fit.

Sofia Ladner, MPH

Research and Evaluation Project Manager