Mayo Clinic's Kim M. Barbel Johnson on Community Engagement in Clinical Trials

3/11/2025

Written by

Dr. Kim M. Barbel Johnson, D.O., M.P.H., Director of Community Clinical Trials Administration, Mayo Clinic Comprehensive Cancer Center
Dr. Kim M. Barbel Johnson, D.O., M.P.H., Director of Community Clinical Trials Administration, Mayo Clinic Comprehensive Cancer Center

Dr. Kim M. Barbel Johnson, D.O., M.P.H., the Director of Community Clinical Trials Administration at the Mayo Clinic Comprehensive Cancer Center, is known for her integrity, collaborative spirit, and ability to inspire multi-disciplinary teams as a respected health advocate with nearly three decades of clinic and research experience in Jacksonville, Florida. 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.

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.

Looking ahead, how do you envision the evolution and expansion of the Health Equity Research Experience (HERE) program in addressing health disparities through clinical research?

The HERE program has tremendous potential to transform how we approach health equity research. I envision it expanding to create a pathway for diverse researchers through sustained mentorship. I also anticipate more cross-disciplinary collaborations, and more opportunities for longitudinal research that is adapted to a more local context.

Most importantly, 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. By demonstrating the value of community-engaged approaches, we can shift the broader research paradigm toward more equitable practices.

What are the most significant challenges in increasing diverse participation in clinical trials, and how have you addressed them
?

Structural barriers remain formidable challenges—transportation limitations, inflexible work schedules, childcare needs, and financial concerns can make participation practically impossible for many people. We've addressed these by addressing the social determinants of health.

Historical mistrust is another significant challenge, particularly among communities that have experienced exploitation or neglect from medical institutions. Addressing this requires more than just cultural humility training; it demands culture changes that prioritized how community input influences research decisions.

There is also the challenge of sustainability—maintaining community engagement beyond any single study. We address this by integrating research with ongoing community health programs rather than creating separate, time-limited initiatives that disappear when funding ends.

What advice would you give to students interested in pursuing research that addresses health disparities?

First, develop deep knowledge about the communities you hope to serve. This means not just studying health statistics but understanding history, culture, strengths, and challenges. Spend time in communities as a learner rather than rushing to implement your ideas.

Second, build genuine relationships with community members and organizations. These connections will be your most valuable resources and will help ensure your research questions address real community priorities rather than assumed needs.

Third, acquire diverse methodological skills. Health disparities research requires both quantitative and qualitative approaches, and the ability to translate findings into practical, community-friendly formats is essential.

Finally, practice humility and patience. The work of addressing disparities is complex and often slow. Be willing to have your assumptions challenged, to revise your approaches based on community feedback, and to celebrate incremental progress rather than expecting dramatic transformations. Remember that health equity is a marathon, not a sprint, requiring sustained commitment over the course of your career.

What role does technology play in enhancing access to clinical trials for underrepresented populations?

Technology, when thoughtfully implemented, can be a powerful equalizer. Telehealth options for screening, consent, and follow-up visits have removed geographical barriers for rural participants in our trials. Mobile health technologies allow us to monitor outcomes without requiring frequent in-person visits, making participation less burdensome.

In my current role directing Community Clinical Trials Administration at Mayo Clinic Comprehensive Cancer Center, we're implementing innovative approaches to decentralize many of our clinical trial operations. We're also exploring AI applications in endometrial cancer detection that could make screening more accessible in community settings.

Our Community Outreach and Engagement team have helped our clinical trial and research teams to develop culturally specific digital content that addresses common concerns and explains the value of research participation in accessible language.

However, we must be mindful of the digital divide. In communities with limited internet access or technological literacy, high-tech solutions can widen disparities rather than reducing them. We take a "tech plus touch" approach, ensuring that digital tools supplement rather than replace human connection. We have set up Community technology hubs at several American Legion Posts in our community where people can access research platforms with support from trained navigators, have been especially effective in bridging this gap.

How can researchers ensure that the impact of community-engaged trials translates into long-term improvements in healthcare delivery?

Sustainability planning must begin at the outset of any trial, not as an afterthought. This means identifying potential policy implications, reimbursement pathways, and implementation strategies before the research even begins.

Training is another essential component. We invest in building capacity among healthcare providers to implement evidence-based, culturally appropriate care based on our research findings. This often involves creating continuing education opportunities, mentorship programs and pathways that extend well beyond the trial period.

Perhaps most importantly, we maintain accountability to the communities that participated in our research. This ongoing accountability creates pressure for systems to change rather than reverting to business as usual after research concludes.