Ethical Community Engagement: A Path to Health Justice

Individuals have the right to be informed and involved in healthcare decisions that impact them both personally and as part of their communities. Whether it's clinical research, public health studies, or interventions, policymakers and healthcare practitioners have a moral responsibility to foster public engagement in the planning, design, implementation, and evaluation of health initiatives.

During my conversation, with Dr. Ebony Johnson, PhD, MS shared, "Ethical community engagement is all about shared power between the community and the researchers or organizations. It's a partnership, not a one-sided relationship where the community is just a subject. The community is the expert in their lived experiences, and we're here to facilitate that expertise."

This concept resonated deeply with me. Too often, research and interventions focus on what is done to a community rather than with a community. Dr. Johnson stressed the importance of this shared responsibility, saying, "Doing research that doesn’t translate into real life is a waste of time and resources. Especially when taxpayer money funds these efforts, we owe it to the communities we serve to do better."

One of the most thought-provoking parts of our conversation was when Dr. Johnson addressed the issue of data ownership and trust. "Who owns the data?" she asked, emphasizing that this is a fundamental question in ethical community engagement. "The community you're working with is the data. How we store, share, and represent that data can either empower or harm them." This raised a crucial point about the power dynamics often embedded in research and public health initiatives.

Dr. Johnson also pointed out that one of the major barriers to ethical community engagement is trust—or more accurately, the lack of it. "It’s our job as researchers to win the trust of the community," she said. "You can't be upset when people don't trust you, especially when history is filled with examples of exploitation."

Reflecting on our conversation, I couldn’t help but think about the barriers we face in fostering true partnerships with communities. Whether it’s the way data is handled or how programs are designed, we need to do a better job of listening and collaborating. As Dr. Johnson wisely pointed out, “We need to get out of this scarcity mindset, thinking there’s only so much funding or resources to go around. There’s enough for everyone if we work together.”

For those looking to understand how ethical community engagement can drive health justice, this conversation was a powerful reminder of the importance of partnership, trust, and accountability. We need to shift from a model of “helping” communities to one where we uplift and empower them through shared decision-making.

You can watch the full episode on YouTube.

Let me know your thoughts on this topic—I'd love to continue the conversation!