During our recent community event for health and research awareness, I felt that some of the most important information came from listening to the community.
Community engagement is about creating space for people to share their experiences, questions, concerns and needs. We had the opportunity to hear stories that highlighted broader challenges people may face when navigating healthcare and clinical research.
One community member shared the story of losing a loved one to breast cancer at a young age. The family had experienced firsthand how deeply cancer can affect not only the person diagnosed, but also the entire family. Their experience reinforced the importance of conversations about breast cancer screening, including mammograms, and encouraging people to pay attention to their health. Early detection can provide an opportunity for earlier treatment and, depending on the circumstances, may improve outcomes.
Another community member was already interested in finding a clinical trial related to cholesterol. They had a history of heart disease and felt that the treatments they had tried had not provided the results they hoped for. We showed them how to use ClinicalTrials.gov to search for studies and provided information they could review with their healthcare provider and research team.
That conversation stayed with me because it showed that sometimes the need is already there. A person may already be looking for another option. What may be missing is simply a connection to the right information or some help navigating where to look.
Another conversation highlighted the importance of representation in clinical research. A community member told us they had asked a healthcare provider about a clinical study related to a gastrointestinal condition but had not received information about available studies or resources. This gave me an opportunity to explain that clinical trials may be an option for people who meet the eligibility requirements, and that representation from different communities matters.
When people from different backgrounds participate in research, researchers can better understand how treatments perform across the populations who may ultimately use them. Research is not only something that happens to other people. Communities need to know that they can be part of the research process too.
We also heard about the challenges some community members and their families experience when navigating healthcare through interpreter services. Even when an interpreter is available, communication is not always easy. The language being interpreted may not always match the everyday language a patient or family member understands most comfortably.
This reminded me that providing an interpreter is an important service, but it does not automatically mean that communication has been fully understood. Healthcare organizations also need to consider whether translated and interpreted information is clear, culturally appropriate and understandable in the everyday language people use.
When communication is truly understandable, patients can have greater independence in learning about their health and participating in decisions about their care.
We also met a community member who appreciated a resource we provided for free cholesterol testing. The resource allowed them to book an appointment using a QR code and offered a simpler way to access testing. Bringing information directly into the community made the resource more visible and easier to use.
We met people who did not have health insurance and were looking for healthcare for a variety of health concerns. Because a community healthcare provider was available at the community center at the same time, we were able to direct people to that resource.
None of these conversations was planned as a series of case studies. They happened naturally because people felt comfortable approaching us, asking questions and sharing their experiences. That is what makes community engagement so valuable. When we create an environment where people feel comfortable speaking, we learn things that may not be captured through anything else.
The community gave us more than attendance numbers. They gave us perspective.
We heard about families affected by serious illness. We met people looking for additional healthcare and clinical research options. We heard from community members who had questions about clinical research but had not received the information they were looking for. We heard about the limitations that can remain even when interpreter services are available.
We met people looking for simpler ways to access health resources. And we met people who needed a healthcare connection because they did not have insurance.
These are community voices, and they matter.
For universities, healthcare organizations, researchers and others working to improve health and research, listening to these voices can reveal gaps that may not always be visible from within the healthcare system.
Community engagement can help us understand not only what information people need, but also what prevents them from accessing it, how they understand it and what kind of support makes a resource useful in real life.
Community members’ experiences can help shape how we communicate, how we build trust, how we make resources easier to navigate and how we think about representation in healthcare and research.
We need to meet people where they are, understand the questions they are already asking and recognize the barriers they are already experiencing.
Sometimes we may bring a resource they need. Sometimes we may help them find something they were already looking for. And sometimes, the most important thing we can do is hear their story.
~ Ekta Grewal
Founder, Sikhs in Clinical Research
- October 02, 2026
