Inclusive Research Participation: Why One Size Doesn’t Fit All

The primary mission for clinical trials and research studies is to posit and test solutions to healthcare challenges big and small, so that—piece by piece—we can work toward the dream of a better future for healthcare, and better health for everyone. The bottom of that dream can fall out if we aren’t actively pursuing inclusive research participation from people of various backgrounds, ethnicities, and cultures.

Yet, far too often, representation is lacking, such as in a review of 52 trials where 70% showed notable misalignment between trial participants and the general patient population.  

Designing research without equitable participation is like trying to solve a puzzle with only half the pieces—impossible and fruitless. The truth is that establishing inclusive research participation helps edify health equity—and the good news is that doing so is certainly possible. 

So how can we start effectively and inclusively tailoring outreach for study enrollment? With participant-centered research design.  

Participant-Centered Research Design: How to Be Thoughtful Architects

Designing inclusive clinical research takes more than just good intentions—it requires careful design that meets people where they are, is culturally literate, and addresses barriers to participation with personalized communication and engagement. 

Prioritize Flexibility in Your Outreach 

Research shows that the chances of even just receiving an invitation to a clinical study are impacted by level of education, ethnicity, medical condition, and more. This means that, when it comes to inclusive research participation, we shouldn’t be rigid in how we conduct outreach. For instance, posting flyers on college campuses or in hospitals—places that can possibly stimulate higher participation—may be a good start, but shouldn’t serve as the be all, end all, particularly if their populations are largely homogenous. 

Flexibility in where we go to seek out study participants and how we approach or reach them is critical to generating meaningful results. We need to account for the factors that make people in those locations more amenable to volunteering for clinical research in the first place, and program different forms of outreach to establish more equitable participation. Channels and locations serving diverse communities that may be willing to participate include:

• Local radio shows
• Community centers
• Churches, temples, and mosques
• Barbershops
• Ethnic and traditional grocery stores
• Social media groups 

 Be sure to not limit your community engagement to just one city or neglect to include individuals in suburban and rural locations. However, keep your study location in mind when developing your recruitment strategy, since participants from farther away from that location may be less willing to travel to take part.  

Also consider lowering the sociocultural entry barriers for participants; you might arrange additional sites to conduct the study closer to where potential participants are located, and mention those various sites in your outreach material to provide options. You might also provide accessible settings for individuals with disabilities.

Ensure You’re Devoting Time to Improving Cultural Literacy

Meeting your target population where they are goes beyond geography. You also need the appropriate cultural literacy—the ability to participate fluently in, or fully understand a specific culture, including its traditions, languages, histories, and social norms. Think less about replicating cultural markers to boost your numbers, and more about what it might look like to build and practice cultural literacy across your operations.  

First, consider the cultures and backgrounds of the people who comprise your research team. Building an inclusive team of professionals is a worthy endeavor for many reasons beyond the research you cultivate, but you may also lean on their expertise to help understand the sociocultural groups you’re looking to involve in your study, as well as participant feedback you may receive.

Second, study and weigh the challenges your target populations face in daily life. Empathize with them and keep those challenges in mind when introducing your study to these potential participants. Brainstorm how to position your clinical research in a way that is easy for them to understand, appreciate, and support, with a focus on how it benefits them and the health of their larger communities.

Bring it all Together With Localized Approaches 

Now it's time to fuse these two elements together: Fostering cultural literacy can give you the knowledge you need for how to approach people of various backgrounds, and having flexibility in your methodology can help you implement these learnings. So, what does this look like in practice?

One example is using accessible language when sending a widespread email or circulating flyers in public areas. If you communicate with slang or jargon to reach specific subsets of your target population, you may risk incorrect usage, forfeit credibility, and end up losing interest and engagement. Consider instead general language that’s easy to understand, culturally sensitive, and addresses barriers the community faces.

Additionally, you may gain the trust of the community you’re looking to engage by partnering with local community centers and organizations. Attending events, volunteering at them or otherwise supporting their organizers is a step in the right direction to establishing and building relationships with community leaders and individuals, which in turn is a low-budget way to support more interest in clinical studies and inclusive research participation.

Acclinate's Approach to Tailoring Outreach for Study Enrollment 

This kind of representation in clinical research is a core ambition for Acclinate, as we continue to combine community-building in underrepresented demographics with data analysis to help healthcare organizations actively improve inclusion efforts.

To these ends, NOWINCLUDED, our community health platform, empowers communities of color with trusted information, outlets to share experiences, and opportunities to participate in research and care programs. Furthermore, organizations that partner with Acclinate can use technologies like the e-DICT™ predictive analytics platform and Site Engagement Index (SEI) to enhance precision, improve targeting, and gather data-backed insights. Tools like these can significantly impact organizations looking to cultivate environments amenable to inclusive research participation.

Ready to see how Acclinate can customize your outreach? Schedule a 1:1 meeting with our team to learn more.