Trustmakers: Local voices drive diversity in clinical trials

By nurturing a sense of mutual respect, Inside Edge enlists Black and Hispanic/Latino community influencers as champions for their clients’ clinical studies.

WORDS BY SUZAN GIGNESI

HAVING A DIVERSE TRIAL POPULATION IS CRITICAL IN DETERMINING THE SAFETY AND EFFICACY OF A DRUG AND IN INSTILLING CONFIDENCE IN PHYSICIANS AND PHARMACISTS WHO SERVE BLACK AND HISPANIC/LATINO PATIENTS, since therapies can affect individuals differently based on race, sex, and age. Yet the data is clear: people of color are woefully underrepresented in these studies.

A flood of technology-based recruitment products has recently hit the market, but the team at Inside Edge Consulting doesn’t believe they’re the magic solution to greater inclusiveness. Why? They don’t address the root cause of low minority participation: a breakdown in trust in the healthcare system, the understandable result of a long history of medical exploitation. As Inside Edge President, Lionel Phillips, explains, rebuilding that trust is a boots-on-the-ground activity—a deeply human, not digital, endeavor.

YOU HAVE TO BE WHERE PEOPLE ARE MOST LIKELY TO SEEK CARE—AND WHERE THE TRUSTMAKERS ARE.

It’s why the firm has spent more than a decade working in the heart of underrepresented communities. “It’s important to identify who the patient is speaking to outside of the physician’s office,” says Phillips. “They must be considered as part of the strategy.” In places like Greensboro, NC, Phoenix, AZ, and the Bronx, NY, Inside Edge has built relationships with local, everyday influencers—the people they call “Trustmakers.” Spending time in their communities, learning about their local issues and needs, Phillips and the Inside Edge team have nurtured a mutual respect that turns these individuals into active, authentic champions of the firm’s recruitment initiatives—ready and willing to share their ideas, time, and voices. With Trustmakers at the center, Inside Edge has developed a finely-tuned, unique, community-driven approach that drives real participation.

Diversifying Sites

It all starts by rethinking where trials are held. Traditionally, sites are in communities with relatively small Black and Hispanic/Latino populations, and as Phillips says, “They will always struggle to enroll large percentages of these patients. The numbers just simply aren’t there. You have to be where people are most likely to seek care—and where the Trustmakers are.”

Preparing Communities

The Inside Edge approach also starts early—12 to 18 months before a trial. That provides Trustmakers with the time to inform and educate—not just about the trial, but about the disease symptoms and outcomes. According to Phillips, “One of the most heart-wrenching challenges in recruiting Black and Hispanic/Latino communities is that they’re often unaware of a targeted disease despite the fact that they’re disproportionately affected by it.”

Creating Relevance

Importantly, Inside Edge uses insights from Trustmakers to develop informational materials that are culturally effective— written at appropriate literacy and health-literacy levels and tailored to the concerns of the local population. These are then carefully disseminated through credible channels: the small businesses, houses of worship, and community centers Trustmakers own, lead, and frequent, supplemented by their personal social media, as well as local radio and newspapers.

Inside Edge’s investment in this in-person relationship-building is clearly yielding dividends. Phillips cites a recent study in which they helped a client beat a 50% minority participation target—six months faster than anticipated. “Those are the kinds of results that prove our work with Trustmakers is key to solving the nation’s health inequities.”

WHO ARE THE TRUSTMAKERS?

The choir director. The small business owner. The community organizer. The head of a senior center. The PTA president. The director of the local soccer league. These—along with community physicians and independent pharmacists— are Trustmakers. As Phillips explains, they’re the people who know how their neighborhoods work, and where, when, and how communications will be most readily received. Whose voices will be respected when they talk about an unfamiliar disease and its impact on their community, as well as the value a clinical trial can bring to their friends and family and the process participants will go through.