Creating Inclusive Clinical Trials: Why Authenticity and Patient Stories Are Essential

The push to increase diversity in clinical trials has gained momentum, but true progress requires more than regulatory mandates. It involves building trust, fostering authentic relationships and amplifying the voices of those most impacted by health inequities.

While the pharmaceutical industry has made strides in improving patient diversity in clinical trials, a recent webinar moderated by Kevin Aniskovich, CEO of Jumo Health, underscored that much work remains to ensure trials are truly inclusive and representative of all populations.

In this webinar, industry leaders and patient advocates discussed how authenticity and the patient voice can be leveraged to enhance diversity in clinical trials. The panel shared powerful insights on the role of storytelling, community engagement and long-term partnerships in driving meaningful change.

The discussion outlined actionable strategies that pharmaceutical companies, community leaders and patient advocates can use to build trust and inspire participation from underrepresented communities.

Authenticity as the Foundation of Trust in Clinical Research

Diversity in clinical trials cannot be achieved overnight. As webinar panelist Tony Wafford, President & CEO of I Choose Life Foundation, emphasized, “It is a journey, not a moment.”

At the heart of this journey is authenticity, which requires the pharmaceutical industry to meaningfully engage with underrepresented communities, understand their unique challenges and build trust through transparent, culturally sensitive communication.

“What better legacy could I leave for my children, my grandchildren and future generations than to get involved, to actually create a better world that I want, and we all want, and deserve to live in, and you can only do that by being involved.”

 

— Tony Wafford

This goes beyond delivering a well-crafted message—it involves truly listening to communities, addressing their concerns and overcoming the specific barriers they face in participating in clinical trials.

Wafford highlighted that authenticity leads to trust, and trust leads to action. For the pharmaceutical industry, this means being present in the communities long before recruitment starts, establishing relationships based on mutual respect and showing a sincere commitment to health equity.

Community Engagement: A Critical Component

Building trust and improving trial diversity requires meeting communities where they are—both literally and figuratively. Engaging trusted community leaders and organizations with an established presence in the area can be an effective way to introduce conversations around clinical trials in an environment where people feel safe and understood.

“We learn from both our victories and the challenges and barriers we encounter along the way,” said Michele Falk, Senior Manager, Patient Engagement & Recruitment Lead at Bristol Myers Squibb.

“It’s not enough to just say, ‘Here’s a clinical trial, you should consider it.’ We need to educate and empower people, ensuring they feel safe and supported throughout their journey.”

 

­­ ­— Michele Falk

She emphasized that building trust isn’t a one-time effort but requires a sustained presence, listening to community needs and adapting strategies based on feedback.

Falk also pointed out that diversity initiatives cannot be top-down efforts, where the pharmaceutical industry simply introduces clinical trials into a community. Instead, these initiatives must involve the community from the ground up.

For example, community action boards, made up of individuals who are representative of their communities and committed to advocating for health equity, can help guide strategies that are culturally appropriate and tailored to the specific needs of the population. This collaborative approach addresses historical mistrust while ensuring that diversity efforts are meaningful and part of a larger, sustainable movement, rather than merely token gestures.

The Power of Patient Voices in Changing the Narrative

One of the most effective ways to increase participation in clinical trials is by elevating the voices of those who have experienced them firsthand. Patient stories create emotional connections. Stories can also help dismantle the perception that clinical trials are intimidating.

When individuals hear from others who share similar experiences—especially those from their own communities—the process can become more relatable and less overwhelming.

LaToya Bolds-Johnson, a breast cancer survivor and passionate patient advocate, shared her personal journey navigating clinical trials. Her story highlights how even those with medical expertise can face barriers to accessing trials. “I realized very early in my chemotherapy journey when I was asking to be part of clinical trials, that I was being dismissed,” she recalled.

Despite her medical background, LaToya encountered significant challenges in finding and enrolling in a trial. She noted, “I was literally sending my oncologist clinical trials that I found. Most people don’t know how to do that. If you go on the clinical trials website, it’s very complicated. Even healthcare providers struggle with the terminology and complexities.”

“I needed other people who look like me—especially African American women, who have the highest mortality rates from breast cancer, specifically triple-negative breast cancer—to know, ‘This is what happened to me.’”

 

­­ ­— LaToya Bolds-Johnson

Diagnosed in 2021 with stage 3C triple-negative breast cancer, LaToya’s experience inspired her to become an advocate through her nonprofit, The Tatas 365, which raises awareness about early breast cancer screening for high-risk Black women.

LaToya’s persistence in advocating for herself underscores the broader issue of access and inclusion in clinical research. Her story illustrates the challenges many patients face, particularly those from underrepresented communities, and highlights the critical need for the healthcare industry to actively listen, engage and support diverse patient populations.

How Patient Stories Can Create a Lasting Impact

Storytelling is one of the most effective ways to connect with potential clinical trial participants. It’s an age-old method of communication that fosters understanding and empathy. For clinical trials, storytelling can cut through the uncertainty and fear surrounding the process.

“The importance of storytelling and the power of the patient’s voice can serve as a means to not only drive health literacy, but more engagement and participation in clinical trials.”

 

— Kevin Aniskovich

When patients like Bolds-Johnson share their authentic experiences, it resonates with others who may be facing similar health challenges and concerns about trial participation.

Gwen Oakes, Director of Global Trial Optimization at Merck, emphasized the power of stories in making clinical trials more relatable and accessible to a broader audience. By featuring real stories from diverse patients through video and educational content on their clinical trials website, Merck aims to make the clinical research process accessible to all people.

Overcoming Barriers to Participation

Access to clinical trials remains one of the biggest barriers to participation for underrepresented communities. These challenges range from logistical issues, such as travel distance to trial sites, to a lack of awareness being provided about the clinical trial process. Even when patients are informed, navigating the complex enrollment systems can be overwhelming.

Bolds-Johnson’s experience of having to fight for her inclusion in a trial—even with a medical background—highlights the difficulties that many patients face. For those without a healthcare background, navigating clinical trial information can be even more daunting.

Falk emphasized the need for education and bridging gaps, not just for patients but for healthcare providers as well.

“We need to build those pathways. Those streets don’t exist,” she said, pointing out that both healthcare providers and patients often lack the information they need to connect with clinical trials. Educating providers on available trials within their own geographic regions can help ensure that patients are referred to appropriate studies, increasing overall participation and diversity in trials.

In addition to education, community engagement plays a crucial role in overcoming participation barriers. As discussed in the webinar, community action boards can foster trust and improve trial diversity. These boards, made up of individuals from the communities being approached for clinical trials, can guide strategies to ensure they are culturally appropriate and responsive to the specific needs of the population.

By involving local leaders and advocates, the industry can create stronger connections with communities and develop initiatives that resonate on a personal level.

“We want to make sure that people have access, that they have awareness and that they have education.”

 

— Gwen Oakes

For pharmaceutical companies, this also means developing clearer, more accessible resources that make it easier for both patients and healthcare providers to understand the clinical trial process. Simplifying medical jargon and offering educational materials in multiple languages are small but important steps toward increasing inclusion.

By leveraging community action boards and improving trial information accessibility, the industry can help individuals make informed decisions about participation.

Collaboration and Partnership for Real Change

Making clinical trials more diverse, equitable and inclusive isn’t something that can be done in isolation. It requires collaboration across the pharmaceutical industry, regulatory bodies, patient advocates, healthcare providers, community leaders and more.

“Not one of us has all the answers, but the answers rest within us all.”

 

— Kevin Aniskovich

As the webinar panelists pointed out, no single group has all the answers, but together, we can all make meaningful strides toward more inclusive clinical trials. There is no one-size-fits-all solution to this issue. Each community is unique, and the strategies for engaging with them must be tailored accordingly.

Authentically elevating diverse patient voices and pursuing community engagement are critical to this process. By building trust, fostering long-term relationships and making the clinical trial process more accessible, the pharmaceutical industry can ensure that research reflects the diversity of the populations it aims to serve.

This article was created in collaboration with the sponsoring company and the Xtalks editorial team.