Community engagement is essential in today’s clinical research landscape. At Sikhs in Clinical Research (SICR), we have built our entire mission around this principle. For too long, many communities, especially South Asian and Sikh population, have not been involved much in conversations about clinical research.
From grassroots efforts to joining community gatherings, we have engaged directly with people in their own spaces, where they live, worship, learn, and connect, to demystify clinical research, break down misconceptions, and contribute to the goal that the research reflects the rich diversity of our communities.
Why This Work Matters
We are living in an era where the number of clinical trials is increasing, but awareness and participation from underrepresented groups have always been a challenge. Many individuals still don’t know what a clinical trial is, how to join one, or why it might be relevant to them.
For the Sikh community, they have always been ahead in the humanitarian service to blood donation drives when it comes to charity, contributing globally, and helping others, as the Sikh values they carry. Even during the pandemic, they have been ahead when serving free meals and medical professionals treating affected people. How can they be behind in research if they are aware that their small contribution to research can help not only themselves but many in the future? Lack of awareness, language barrier, and cultural differences could create a gap. We hear the same questions over and over at our events:
- “What is clinical research?”
- “Is it safe?”
- “Why haven’t I heard about this before?”
This is the reality we are working to change.
Defining Community with Purpose
At SICR, “community” doesn’t mean just a ZIP code or neighborhood. For us, community is shared culture, language, values, and lived experience. A mother in a suburban area, a Sikh student in Chicago, and a retired elder volunteering at a local Gurdwara (Sikh temple) are all part of our community, and each one deserves access to education and opportunities to participate in research that may directly affect them.
This deeper definition shapes everything we do. It pushes us to ask:
- What does health equity mean to the community?
- Who are the trusted messengers here?
- Where does information naturally flow?
- How has the community historically experienced healthcare and research?
We map this ecosystem not just through data, but by being present and listening.
Building Trust Before Asking for Participation
True engagement is not about dropping off flyers when a trial needs volunteers. It is about showing up, building familiarity, and earning the community’s trust.
At SICR, we have done this by:
- Presenting at large community gatherings
- Offering educational sessions in Punjabi and English
- Empowering the community to contribute to the field in any way possible
- Engaging with community members, Sikh temple committees and leaders, student groups, and other advocacy organizations
- Listening to the stories and hopes people share about healthcare
- We have found that the most powerful connections often happen in small moments: during a one-on-one, after a group talk.
Engagement vs. Outreach: Knowing the Difference
Outreach can be transactional. Engagement is transformational. Outreach says, “Here’s what we want from you.” Engagement asks, “What do you need from us?” We have learned that when we stop pushing information and start listening, people open up. They share their stories, and these insights don’t just shape our approach; they guide our mission.
Practical Strategies That Have Worked for Us
- By utilizing our resources well, we have found ways to build meaningful connections and share trusted information
- Working with Sikh temple committees to host health and research info sessions after prayer services
- Using Punjabi translations to reach non-English speaking elders
- Training our staff and ambassadors in patient-centered communication
- Traveling across different states in the US to expand our reach
- Creating plain-language, translated materials about research participation
- Empowering to bring more Sikh professionals into the research workforce
These efforts are effective, and for sustainability, we have to keep the momentum going.
Measuring Impact Beyond Enrollment
Too often, the success of engagement is judged by trial enrollment alone. But we’ve learned that the real impact goes deeper:
- Are more people asking questions about research?
- Are they referring friends and family?
- Do they recognize our team and trust us?
- Are local leaders inviting us back?
- Do people feel seen and heard?
- Do they have access to the resources they need?
We document these stories. We capture conversations. These are our metrics because they represent the steady building of trust.
Why We Keep Going
We believe this work is too important to wait for perfect conditions. Communities can’t wait. And what impact looks like:
- Engagement in our community events
- Testimonials from attendees and community voices show how awareness has added to their learning experience
- Increased interest in research within the community
Moving Forward, Together
We know we are just one piece of the puzzle. Community engagement doesn’t belong to one organization, one trial, or one region; it belongs to all of us working in research. And it requires collaboration and a deep respect for the people we serve.
At Sikhs in Clinical Research, we’re committed to:
- ✅ Showing up consistently in the community
- ✅ Empowering professionals to explore clinical research career opportunities
- ✅ Building trust before asking for participation from patients
- ✅ Supporting sponsors and sites with the cultural resources
- ✅ Creating resources to break language barriers
- ✅ Centering patient voices in everything we do
Final Reflection
Engagement is not a campaign or a checkbox. It is a relationship. A responsibility. A promise.
When we invest in communities, truly invest, we make research stronger and more inclusive, and when we get it right, the benefits don’t stop at trial enrollment. They ripple out into awareness, empowerment, and long-overdue representation.
Let’s continue doing this work, with intention, with consistency, and with heart.
