When people who face inequities participate in the research process, they create solutions that drive lasting change. Learn how RWJF is supporting this work..
“When I joined a research team, I thought, ‘I’m going to teach these academics something!’ Researchers come up with theories all the time; they understand that there are needs to be met. But the best way to meet any need is to talk to the person who has a need, and a lot of times, we miss that part of research. Can we use our research opportunities to find solutions that truly impact and make a difference with the people we serve?”
These words from Systems for Action grantee Thomas Cotton, MA, Founder and CEO of Redemption & Advancement Alliance, remind us that people who experience daily challenges often have the best solutions to those challenges. The Alliance serves as the community lead for the grant, Research to Understand Systems of Housing (RUSH).
His quote aligns with our priorities at Systems for Action, a research program of the Robert Wood Johnson Foundation. We fund research that connects medical care, public health programs, and social services to improve health, overcome systemic racism, and ensure health is no longer a privilege, but a right.
We believe community voices must be a core part of research every step of the way. When people who face systemic inequities are involved in the research process, they bring ideas, ask tough questions, and help identify solutions that best address the community’s needs. We’re looking at how we can better support research that shifts power so that communities can lead the research, in partnership with research institutions, to improve health and racial equity.
We start that work by doubling down on our commitment to evidence. Strong research will always be fundamental to improving health and wellness; it can help us identify the most effective healthcare practices.
However, for too long, biases have tainted research by treating race as a biological rather than a social construct, and by focusing on improving health outcomes primarily for those who can already access and afford high-quality care. And, too often, research ignores communities facing the greatest barriers to health.
Repairing these biases by changing who leads and conducts research would help make our public health system more accountable to the communities it should serve.
For example, in two communities in Bolivia, researchers saw rising diabetes rates and little to no physical activity. But they couldn't figure out why. When they spoke with residents, they learned that people were afraid of stray dogs and avoided going outside for walks, to play, or to engage in other activities. Once the community started neutering and spaying dogs, physical activity levels rose and diabetes rates declined. This type of knowledge comes only when researchers speak with residents to learn about their challenges and potential solutions.
Three Ways to Share Power in Research
At Redemption & Advancement Alliance, Cotton manages the RUSH grant. He says the project’s research approach is helping shift power to the community. RUSH focuses on addressing the unmet health and social needs of fathers experiencing housing insecurity (a largely invisible group) and, ultimately, reducing homelessness. Here are three key takeaways from its work.
1. Partner Authentically
Improving health and wellbeing starts by asking the community what it needs, actively listening to its response, identifying shared goals, and discussing how the community and research institutions can achieve them. Cotton calls this “partnership equity.”
A true partnership, he notes, goes beyond occasionally checking in with a Community Advisory Board; it requires sharing decision-making to gain insights the research would not otherwise reveal—as well as sharing funds. The partners in the RUSH project agreed to allocate roughly 70% of the grant award to the Redemption & Advancement Alliance, the community lead on the project. RUSH also scheduled meetings when fathers facing housing insecurity could participate to ensure their voices shaped the work at every step.
2. Share Data Openly and Information Quickly
Too often researchers force communities to wait for months or even years to see data or results. Sometimes, the research findings are irrelevant by the time the community learns about them. RUSH turns that dynamic on its head by giving all partners timely access to the data it collects.
While the project is still a work in progress, the RUSH team is already thinking about ways to ensure the findings reach the community—through social media, community meetings and events, and word-of-mouth. “We need to get information to the right folks, a lot faster,” Cotton says.
3. Build Long-Term Relationships
Teaming with local partners can help uncover and address deeper issues behind racial and health disparities, but funding comes and goes, and rarely does one research project make transformative change.
It’s critical to commit time and energy to community partners so researchers can build lasting relationships, even when research is not funded. Cotton’s vision is to establish processes to keep researchers engaged with communities until the next round of funding is available.
RUSH is one of many examples of research teams collaborating and innovating to help community members reach their best health and wellbeing. Its work shows that transforming who leads research and how research is done can improve public health and advance racial and health equity.
About the Author
Carrington Lott, deputy director of Systems for Action, plays a key role in the financial, operational, and strategic leadership of the National Program Office.