Skip to main content

Stream every public session from the 27th annual Global Conference right here on our website.

Want More Inclusive Clinical Trials? Meet Me in the Middle

Power of Ideas
Want More Inclusive Clinical Trials? Meet Me in the Middle

In my private conversations with the leaders of underserved faith and community-based organizations, those trusted organizations that sit in the middle between community members and health-care stakeholders, we spend a lot of time talking through the strategies needed to improve their relationships with health-care stakeholders and clinical researchers while also advancing the health and well-being of their communities.

Our discussions invariably turn to lack of trust, various social determinants of health, and systemic racism, and not necessarily in that order. As we talk about how to best create equitable partnerships with health-care organizations and clinical researchers, I am often reminded that the wounds and emotions around the history of inequitable, racist, and cruel treatment of communities of color within the clinical trial enterprise are still raw, as The New York Times reports.

While many faith and community-based leaders readily acknowledge the importance of their community members participating in clinical research, questions always emerge: “Why should the onus be on us to just suddenly become more trusting? What has changed within the clinical trials enterprise to earn our trust? Where are the Black researchers/doctors? Show me the list of what precisely is different from before.”

These frustrations do not seem completely intractable, but they are steeped in a well-earned lack of trust in clinical research, exacerbated by the inability of researchers to clearly articulate why they should engender trust. And a lack of trust in the leadership of influential faith and community-based organizations easily translates to community members as well.

Why should the onus be on us to just suddenly become more trusting?

The Path to Potential Partnerships

I firmly believe that a more diverse and inclusive clinical research enterprise will largely be defined by the number of equitable partnerships created with underserved faith and community-based organizations. The path to those potential partnerships begins by building trust, with community-based organization leaders in the middle—those leaders who are generally known, liked, and trusted by their community members and whose organizations remain historically embedded in their communities.

Importantly, creating equitable and ongoing connections would, in turn, create significant opportunities for co-learning, according to an article in Preventing Chronic Disease. There would be opportunities for researchers to show community leaders and community members exactly what has changed about the clinical research process, why it is in their interest to participate, and how they, as community leaders and members, might meaningfully contribute and equitably benefit from their contributions.

Conversely, and not to be understated, there would also be opportunities for community leaders to raise the cultural competency of clinical researchers and educate them on the reasons why marginalization and mistrust are still felt by community members. These community leaders really are seeking genuine partnerships with health-care organizations and clinical researchers who are authentically interested in equitably working with them, as reported in BMC Medical Research Methodology.

Community Leaders as Partners, Not Commodities

However, today, many community-based organizations find themselves inundated with opportunities for “sponsorship,” not partnership from health-care stakeholders. These community-based organizations are generally only seen as commodities, not equitable partners, and as a result, they are leveraged for their market access, market intelligence, and ability to collect data but receive little benefit in return. Many times, these community-based organizations are not factored into the sponsor’s budget and instead are asked to volunteer staff and personal time to distribute information. Moreover, they receive negligible usable data back about their very own communities. And once again, valuable community-based organizations find themselves underappreciated, underutilized, and underserved.

So, now is the time to meet me in the middle. The middle is where we can collaborate and build a much more inclusive and equitable health-care and clinical research enterprise:

  • one that strengthens and empowers the trusted community leaders and does not view their community-based organizations as sponsorable commodities but sees them as valuable partners with critical insights and qualified leadership;

  • one that consistently acknowledges the history of race-based inequities from slavery until today and is committed to change;

  • one that is committed to educating, training, and developing principal investigators of color; and

  • one that unites the resolve to act with strategies that drive towards a more inclusive clinical research enterprise in ways that will always be easy to see, easy to measure, easy to understand, and easy to acknowledge.