On Apr. 2, the Interdisciplinary Health Sciences Institute (IHSI) and Mayo Clinic & Illinois Alliance for Technology-Based Healthcare, aim to shed light on community engagement and community-based participatory research with an engaging presentation by Dr. Kim M. Barbel Johnson, Mayo Clinic Comprehensive Cancer Center Director of Community Clinical Trials Administration.
Known for her integrity, collaborative spirit, and ability to inspire multi-disciplinary teams, Dr. Kim M. Barbel Johnson, D.O., M.P.H. is a respected health advocate with nearly three decades of clinic and research experience in Jacksonville, Florida. As a community-centric, patient-focused family physician, principal research investigator, and compassionate provider of primary, long-term, and urgent care, she has made a lasting impact on the healthcare field and comes highly regarded for her clinical trial expertise and deep commitment to advancing health equity through both academic and community medicine.
Barbel Johnson is a leader and mentor for the Health Equity Research Experience (HERE), a partnership between Mayo Clinic and Illinois. Her ongoing commitment to expanding and strengthening the HERE program underscores her dedication to developing future leaders in health equity research.
“I see HERE evolving from a program focused primarily on research to a comprehensive health equity initiative that influences policy, clinical practice, and community health simultaneously,” Barbel Johnson explained. “By demonstrating the value of community-engaged approaches, we can shift the broader research paradigm toward more equitable practices.”
Dr. Kim M. Barbel Johnson on Community Engagement in Clinical Trials
Focused on bridging the gap between academic research and community needs, Barbel Johnson has dedicated her work to fostering a more equitable healthcare landscape by ensuring that medical advancements reach historically marginalized populations.
Can you briefly share your background and what led to your current research focus?
My journey to healthcare began with a fundamental desire to serve communities that have historically been underrepresented in medical care. Growing up in the US Virgin Islands, I observed health disparities firsthand, which sparked my interest in not just treating illness but addressing systemic barriers to healthcare. This early exposure to healthcare challenges shaped my perspective. After completing medical school and residency at Mayo Clinic, I dedicated my career to community-centric Family Medicine, which allowed me to build meaningful relationships with patients across generations.
What truly guided me toward my current research focus was witnessing patients who could benefit from clinical trials but were unable to access them due to various barriers—from lack of information to mistrust of medical institutions. Having practiced in Jacksonville almost 3 decades, I've developed deep community connections that positioned me to bridge this gap between academic research and community needs. My work aims to ensure that innovative medical advancements reach all populations, particularly those who have been historically marginalized in healthcare research.
What innovative strategies have you found most effective in increasing diverse participation in cancer clinical trials?
The most effective strategies have been those that prioritize relationship-building over recruitment. We've moved away from viewing communities as simply sources of research participants and instead developed long-term, reciprocal partnerships. Some specific approaches that have yielded positive results include:
First, employing community health navigators and community scientist who come from the communities we serve. These individuals understand cultural nuances and can explain clinical trials in accessible, relevant terms. They serve as trusted intermediaries between scientist, research institutions and community members.
Second, creating community advisory boards that have real decision-making power in the research process. When community members help design studies, determine outcome measures, and interpret results, the research becomes more relevant and acceptable to potential participants.
Third, establishing consistent presence in communities through health fairs, educational sessions, and regular communication about research findings. This ongoing engagement helps build trust over time rather than approaching communities only when recruitment is needed.
How do you approach building trust within communities to encourage clinical trial participation?
Trust is the foundation of all our work. It must be earned, and it cannot be rushed or manufactured. In my approach, transparency is paramount—being honest about past research abuses, acknowledging historical injustices, and clearly explaining both the potential benefits and risks of participation.
Another critical element is ensuring that the benefits of research flow back to communities. This means sharing results in accessible formats, implementing findings in community clinics, and providing tangible health resources regardless of trial outcomes. Communities need to see that their participation leads to meaningful improvements in their healthcare landscape.
Perhaps most importantly, we invest time in listening to community concerns without immediately trying to "solve" them. Sometimes researchers are quick to offer solutions before fully understanding the depth of community perspectives. Patient listening builds trust far more effectively than eloquent persuasion.
How do partnerships between institutions like Mayo Clinic and community organizations contribute to successful clinical trials?
These partnerships create a vital ecosystem where each party contributes unique strengths. Community organizations bring invaluable local knowledge, established trust, and cultural expertise that academic institutions simply cannot develop overnight. Meanwhile, Mayo Clinic contributes scientific expertise, research infrastructure, and resources that amplify the reach and impact of community-based initiatives.
In practice, this means that when we partner with local churches, cultural centers, or neighborhood associations, our clinical trials become more relevant, accessible, and ultimately successful.
These partnerships also create sustainability. When community organizations are meaningfully involved in research, they develop capacity to continue health promotion activities even after specific trials end. This creates a lasting impact that extends far beyond the immediate research outcomes.
What lessons from your experience could benefit future research collaborations aimed at reducing health disparities?
One crucial lesson is that reducing disparities requires addressing social determinants of health alongside clinical interventions. Research that ignores housing, transportation, food security, or employment issues will have limited impact on health equity. Future collaborations need interdisciplinary teams that include social scientists, community organizers, and policy experts alongside medical researchers.
Another lesson is the importance of investing in research capacity within underserved communities. Training community members in research methods and as community health workers helps to create sustainable pathways for diverse talent to enter the research field, which will naturally lead to more equitable research questions and approaches.
I've also learned that timing matters tremendously. Academic research timelines often conflict with community needs and rhythms. Being flexible with implementation schedules to accommodate community events, cultural holidays, or local priorities demonstrates respect and improves collaboration outcomes.
Finally, I cannot overstate the value of celebrating small wins along the way. Health disparities are deeply entrenched, and change comes incrementally. Acknowledging progress, however modest, maintains momentum and nurtures the relationships that make difficult work possible.
Barbel Johnson also responded to questions on significant challenges, advice for students, the role of technology, and translation into long-term improvements. Read the full interview
During her presentation at the Beckman Institute, Barbel Johnson will discuss her work on evaluating innovative approaches to increasing diverse participation in cancer clinical trials through community engagement, analyzing implementation strategies that effectively bridge academic research and community participation, and demonstrating the measurable impact of community-engaged clinical trials on reducing cancer care disparities. The presentation will be followed by a Q&A session. Attendees will learn to address health disparities through community engagement and community-based participatory research.
This event holds particular significance in the pursuit of health equity and a growing focus in research and medical practice. Registration is open to all faculty, staff, students, healthcare professionals, and community members eager to deepen their understanding of community engagement and community-based participatory research to transform health disparities.