Authenticity boosts diverse participation in clinical trials
"I would like to see more focus on how Black, Indigenous and people of color can be part of the process—not just subjects of the process."Clarence Jones
As a community health strategist, I spend a lot of my time working to develop relationships and connect with neighborhood residents to improve community health outcomes. One of the most challenging pieces of this role is to engage and talk with community members about the importance of clinical trials. These challenges are compounded by the expectations, history and myths associated with research in Black, Indigenous and people of color (BIPOC) communities. My passion and experiences have enabled me to develop authentic relationships in order to have open conversations around the topics of health and research.
While I personally recognize the value of clinical trials to address health disparities in my community, it is often challenging to persuade others. To overcome this, I carefully and consistently craft my conversations to bridge that gap whenever possible. I have worked for 25 years to develop allies within the community and the academic research world who knew my passion, understood my work and felt comfortable working with me. I understand the importance of establishing a history of positive community engagement in order to be able to earn the right to engage with people on difficult or complicated topics, such as clinical trials.
People are willing to participate in clinical trials—we just have to make it easier
I've observed in my work that people in the BIPOC community are often hesitant to engage in clinical trials. A 2014 study found a variety of barriers to research participation, such as mistrust of medicine and research, fear of unintended outcomes, competing priorities and lack of access to reliable information. However, this study also showed that across racial and ethnic groups, people also indicated a willingness to participate in research for altruistic reasons, such as helping their family or community.
That "willingness to help" is out there, and we need to do more to overcome barriers and to help people to act on their willingness and desire to be part of the scientific process. I would like to see more focus on how BIPOC people can be part of the process—not just subjects of the process. We need to engage in friendly, open and direct dialogue with community members regarding clinical trials and how they can benefit the people and communities they care about.
"Mr. Jones is a trusted voice in his community who provides a safe space for those in his community to address complex or difficult issues related to health."
- LaPrincess Brewer, M.D.
LaPrincess Brewer, M.D., a preventive cardiologist and health equity researcher at Mayo Clinic, relies on the insights of community health strategists to guide her research. Clarence Jones is one such strategist. Jones serves as co-chair and executive director of Dr. Brewer’s community research program, Fostering African American Improvement in Total Health, known as FAITH!
Four tips for more inclusive engagement in clinical trials
I would like to offer four suggestions to researchers looking to improve inclusivity in clinical trials:
- Find a community leader, an organization or someone who self-identifies as someone interested the medical research and clinical trials. They can enhance your work and help you reach others in their community.
- Focus on building relationships. I used to be a salesman, and it all comes down to people and relationships. A lifelong teacher shared that "organizations do not sell to organizations; people sell to people." It was an enduring reminder of the importance of relationships in dealing with complex topics.
- When recruiting clinical trial participants, tell people up front how the information from the study will be used and the good you hope it will do. Be honest, open and transparent. This is one of the most underutilized bridge builders I’ve observed in interactions between researchers and people in communities.
- Anticipate barriers and potential "issues" and provide a safe, open space for discussion and resolution. You will have issues. Everyone does. Being prepared will build trust and enhance the development of the work.
The value of authenticity
During my work with Mayo Clinic and with Dr. Brewer, I've seen the results of this type of intentional community-engaged work.
I was first connected to Dr. Brewer when she was starting a research program called Fostering African American Improvement in Total Health (FAITH!), an effort aimed at preventing heart disease in underserved communities. I was one of the community leaders she reached out to when starting her program, and we vetted each other for 18 months before we decided to work together. That time allowed us to get to know and trust one another, for it also allowed me to validate both Mayo and Dr. Brewer as a partner to members of my community.
Authentic relationships have always been the foundation of Dr. Brewer's approach, with a clear intent to inform, educate, engage and disseminate information back to the community.
What is the value of authenticity? Priceless!!
I've seen the impact of this work, and I feel fortunate to have been able to work with Dr. Brewer and with Mayo Clinic to engage more people in research and clinical trials that can improve the health of my community.
This research program is supported by the Mayo Clinic Center for Clinical and Translational Science, which is funded by Clinical and Translational Science Award grants UL1 TR000135 and KL2 TR002379 from the National Center for Advancing Translational Sciences.