What does true representation in clinical research look like? And why does it matter?

In this episode of Voices of Inclusive Research, host Dr. Ren sits down with a special guest, her husband Michael Jones to discuss the pressing need for diversity in clinical trials. They dive deep into the systemic barriers that prevent communities of color from participating in research and explore the real-world consequences of underrepresentation. Mike shares his firsthand experience as a participant in clinical trials, shedding light on how trust, awareness, and access play important roles in ensuring equitable healthcare outcomes.

Tune in as Renarda and Mike break down the challenges, dispel common myths, and offer solutions to make clinical research more inclusive. Whether you're a researcher, healthcare professional, or advocate for health equity, this conversation is a must-listen.

🎧 Listen now!

Must-Hear Insights and Key Moments

• Representation in Research: A Critical Need
  Michael Jones discusses why representation in clinical trials is not just an ethical issue but a scientific necessity. When studies fail to include diverse populations, medical advancements can leave entire communities behind.
• Trust and Mistrust in Medical Research
  A long history of unethical medical practices has led to deep mistrust in communities of color. Mike and Renarda explore ways to rebuild trust through education, transparency, and authentic community engagement.
• Breaking Down Barriers to Participation
  Many individuals are unaware of clinical trial opportunities or face logistical barriers such as cost and transportation. Mike shares strategies to improve accessibility and ensure that clinical research benefits everyone, not just a select few.

Words of Wisdom: Standout Quotes from This Episode

1. "We can’t achieve true health equity if clinical research doesn’t reflect the diversity of the world we live in." – Michael Jones
2. "Trust is built over time, and the only way to earn it is through transparency and action." – Michael Jones
3. "People can’t participate in what they don’t know exists. Awareness is just as important as access." – Dr. Ren
4. "Clinical research isn’t just about science—it’s about people, and people need to see themselves represented." – Michael Jones
5. "Diversity in clinical trials isn’t a box to check; it’s a responsibility we all share in the pursuit of better health outcomes." – Dr. Ren

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Did you know that thyroid eye disease (TED) can cause vision loss, double vision, and even blindness?

In this episode of Voices of Inclusive Research, host Renarda Jones sits down with Dr. Vivek Patel, Chief of Neuro-Ophthalmology at UC Irvine, to explore new breakthroughs in thyroid eye disease treatment and the critical need for diverse participation in clinical trials.

Dr. Patel explains the warning signs of TED, who is most at risk, and why many clinical studies lack representation from communities of color. He breaks down the latest biological treatments beyond steroids and surgery, and how they’re transforming care for TED patients.

Why does representation matter in TED research? Because different populations may respond differently to treatments, and without diversity in clinical trials, we don’t have the full picture.

🎧 Listen now to learn more about the latest advancements in TED research and why diverse participation is key to better outcomes for all.

Learn more about TED research and clinical trials:

• TED Community link for more TED patient and caregiver information and resources. That URL is https://tedcommunity.org/
• argenx website: https://argenx.com/
• argenx Clinical Trials List: https://argenx.com/patients/clinical-trials
• Uplighted Study – TED Research: https://uplightedstudyus.com/
• Contact: [email protected] (Patient Advocacy Lead for the Thyroid Eye Disease program at argenx)

Must-Hear Insights and Key Moments

• What is Thyroid Eye Disease?
  Dr. Patel explains TED as an autoimmune disorder that impacts the eyes, causing inflammation, vision issues, and disfigurement—sometimes leading to blindness.
• The Evolution of TED Treatments
  For years, steroids and surgery were the only treatment options. Now, new biological therapies are changing how TED is managed.
• The Importance of Early Detection
  Common symptoms like dry eyes, puffiness, and double vision can signal TED. Seeing an eye doctor early can lead to faster diagnosis and treatment.
• Diversity in Clinical Trials Matters
  Most research on TED has been conducted on predominantly white populations—meaning we lack critical data on how different ethnic groups respond to treatments.
• Why More People Should Consider Clinical Trials
  Dr. Patel highlights how clinical trial participants receive high-quality, closely monitored care and play a crucial role in advancing treatment options for future generations.

Connect with argenx:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

What does inclusive research really look like in action?

In this special solo episode of Voices of Inclusive Research, I share exciting community updates, upcoming events, and ways you can get involved in advancing inclusive healthcare research.

From monthly Chow & Chat discussions on health topics like brain health and autoimmune diseases to major events like the Community Clinical Trial Health Forum, there are more opportunities than ever to learn, connect, and take action. Plus, don’t miss the Spring Into Action fundraising gala, a night dedicated to celebrating progress and raising support for impactful initiatives.

Your voice matters! Have ideas for future events? Diverse Research Now wants to hear from you. Tune in to learn how you can help shape the future of research and health equity.

🎧 Listen now to be part of the movement for inclusive research!

Must-Hear Insights and Key Moments

• Chow & Chat: Community Conversations on Health
  Monthly events in San Diego and Chula Vista bring the community together to discuss health topics and cutting-edge research in a welcoming and informative space.
• The Importance of the Community Clinical Trial Health Forum
  This event connects researchers and community members, creating real conversations about clinical trials, health equity, and access to care.
• The Power of Fundraising for Inclusive Research
  The Spring Into Action fundraising gala supports initiatives that ensure underrepresented communities have a voice in research and healthcare advancements.
• Why Community Feedback is Vital
  Diverse Research Now is committed to creating events that truly serve the needs of the community. I encourage the listeners to submit ideas and help shape future initiatives.
• The Bigger Mission: Inclusive Research for Better Health
  I emphasize that clinical research must reflect the diversity of the communities it serves, ensuring equitable health outcomes for all.

Follow Dr. Ren:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

What happens when personal experiences collide with a passion for science and business?

Dr. Denise Bronner, CEO and founder of Impactful Ventures, shares her journey from academia to consulting, pharma, and venture capital—all with the goal of driving meaningful change in healthcare.

In this episode of Voices of Inclusive Research, host Dr. Ren and Dr. Bronner discuss the urgent need for diversity in clinical research, the importance of equitable healthcare, and how pharma can better engage communities. Drawing from her own family’s health struggles, Dr. Bronner highlights why representation in research is critical and why it’s time to challenge the assumption that certain demographics "aren’t interested" in clinical trials.

Whether you're a patient, a researcher, or someone invested in health equity, this conversation is a must-listen. Join us as we explore how to create lasting change in the industry.

🎧 Listen now and be part of the movement for inclusive research!

About Dr. Denise Bronner

Dr. Denise Bronner is the CEO and founder of Impactful Ventures, an organization dedicated to advancing equity and innovation in healthcare. With 15 years of experience spanning academia, pharma, consulting, and venture capital, Dr. Bronner is a champion for diversity in clinical research. She holds a PhD in microbiology and immunology and has worked at industry giants like Johnson & Johnson before launching her own venture. Passionate about mentorship, she actively engages with STEM programs to ensure young people—especially those from underrepresented backgrounds—see themselves in science and business.

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Can research truly serve as a resource for the community?

In this episode of Voices of Inclusive Research, host Dr. Renarda Jones sits down with Dr. Krystal Lira, a Senior Research Associate at UCSD, to discuss the power of community-driven mental health research. Dr. Lira shares her journey from academia to real-world research, highlighting the importance of lived experience in shaping effective health solutions.

The conversation dives into why diverse communities struggle to access mental health resources, the barriers they face in research participation, and the critical role of community engagement in building trust. Dr. Lira also emphasizes the need for research to go beyond data collection and become a true resource for underserved populations.

If you’re passionate about health equity, representation in research, and creating real change, this episode is a must-listen!

🎧 Tune in now to learn how we can make research work for everyone!

Must-Hear Insights and Key Moments

• The Role of Lived Experience in Research
  Dr. Lira explains why researchers with lived experiences are essential in shaping mental health and behavioral studies that truly address community needs.
• Bridging the Gap Between Research and Resources
  Research shouldn’t just collect data—it should provide tangible resources to help communities access care and support.
• Mental Health Disparities in Underserved Communities
  Long wait times, cultural barriers, and lack of awareness prevent many from getting the help they need. Dr. Lira discusses how research can bridge these gaps.
• The Disconnect Between Data Collection and Action
  Communities are tired of sharing their concerns without seeing change. Dr. Lira highlights the need for accountability and transparency in research efforts.
• The Future of Inclusive Research
  Dr. Lira and Dr. Jones explore how research institutions and pharma companies can better engage with diverse populations to ensure representation in mental health studies.

About Dr. Krystal Lira

Dr. Krystal Lira is a Senior Research Associate at UC San Diego, specializing in mental health research and community engagement. She earned her PhD in Educational Psychology from Michigan State University in 2022, where her research focused on race, motivation, and identity in STEM fields. Passionate about health equity and behavioral research, Dr. Lira actively works with underserved communities to assess their mental health needs and bridge gaps between research institutions and real-world solutions.

Connect with Dr. Krystal:

• LinkedIn

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

How do we ensure that underrepresented communities benefit from clinical research?

In this episode of Voices of Inclusive Research, Dr. Ren sits down with Dr. Aliya Frederick, a child neurologist and researcher specializing in pediatric migraines. Dr. Frederick shares her inspiring journey, from her early fascination with neuroscience to leading groundbreaking clinical trials at UCSD.

Discover how Dr. Frederick uses her unique platform, Inspired Dream Bigger, to encourage young people of color to envision themselves in healthcare and research roles. The discussion highlights the prevalence and impact of migraines in children and adolescents, with Dr. Frederick emphasizing the importance of representation in medicine and bridging gaps in clinical research.

Listen in as the two explore innovative treatments, the role of mentorship, and the critical need for inclusivity in medical trials.

Must-Hear Insights and Key Moments

• The Intersection of Advocacy and Research: Dr. Frederick’s platform, Inspired Dream Bigger, combines her passion for mentorship with her commitment to increasing diversity in healthcare and research fields.
• Pediatric Migraines and Clinical Trials: Dr. Frederick sheds light on the high prevalence of migraines in children, their impact on quality of life, and the role of clinical trials in expanding treatment options.
• Representation Matters: As a Black woman in neurology, Dr. Frederick emphasizes the importance of representation in healthcare, helping young individuals from diverse backgrounds envision themselves in these spaces.

About Dr. Aliya Frederick

Dr. Aliya Frederick is a child neurologist and researcher at UCSD, specializing in pediatric migraines. With a passion for mentorship and representation, she founded Inspired Dream Bigger, a platform aimed at helping young individuals from diverse backgrounds see themselves in healthcare roles. A graduate of the University of Maryland Baltimore County and an MD-PhD holder in neuroscience, Dr. Frederick combines her expertise in clinical and basic science research to develop innovative treatments. Beyond medicine, she’s a beauty queen using pageantry as a tool for advocacy and community connection.

Connect with Dr. Aliya:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

“True health starts with purpose—and purpose thrives in community.”

In this episode of Voices of Inclusive Research, Renarda Jones talks with Justin Campbell, a UX designer turned health and mindset coach, about the intersection of personal growth, wellness, and inclusive health data. Justin shares how his shift from tech to health coaching was driven by a desire to help others achieve holistic well-being.

He highlights the importance of aligning health goals with personal values, explaining that lasting wellness comes from purpose, not just discipline. This deeper connection, he argues, fosters sustainable habits and meaningful change.

The conversation also tackles the vital role diversity plays in clinical research and how underrepresented communities face barriers to healthcare, often rooted in distrust of medical systems. By increasing diversity among researchers and outreach efforts, they believe these gaps can be bridged, leading to more equitable solutions for all.

If you’re interested in personal growth or passionate about health equity, this episode offers actionable insights and inspiring takeaways on how purpose and inclusion shape better health outcomes.

Must-Hear Insights and Key Moments

• Curiosity as a Catalyst for Growth: Justin Campbell shares how his curiosity led him from design to UX and health coaching, stressing the value of asking deeper questions to optimize life.
• Health and Life Purpose Connection: Emphasizes the crucial link between health and life purpose, noting that good health is essential to achieving personal goals and living with purpose.
• Personalized Health and Research: The need for personalized health care and research, advocating for more inclusive studies to provide accurate, accessible recommendations for all.
• Building Trust with Communities of Color: Justin calls for pharmaceutical companies to build trust by including people of color in both research and decision-making processes, ensuring health advice is culturally relevant.
• Improving Research Accessibility: Making research more accessible by going to communities, rather than expecting participants to come to research sites, to increase participation from underrepresented groups.
• Health Coaching as a Personalized Guide: Focuses on guiding clients through their unique health journeys, offering tailored advice based on individual needs and goals.

About Justin Campbell

Justin is a San Diego-based multi-disciplinary user experience designer and health and mindset coach with a deep-rooted belief in the power of self-mastery, discipline, and a growth mindset to help people achieve holistic well-being. He is passionate about crafting experiences that empower individuals to unlock their full potential, leveraging my expertise in designing enterprise software products, guiding clients in meditation, and coaching them through systematic habit formation to cultivate healthier, more fulfilling lives.

Connect with Justin:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

"Inclusive research isn’t just a goal—it’s a responsibility we all share."

In this special holiday episode of Voices of Inclusive Research, host Dr. Renarda Jones takes a moment to celebrate the incredible journey of the podcast and reflect on the powerful lessons shared by past guests. From breaking misconceptions to fostering trust and advocating for representation, this episode revisits the pivotal conversations that have shaped the podcast’s mission.

She highlights key moments, including Joseph Frazier’s wisdom on preventive research, Mary Futrell’s advocacy for Alzheimer’s awareness, Jen Lothridge’s insights on trust and community engagement, and Fannie Johnson’s practical advice for overcoming mistrust in clinical trials. Dan Sfera’s call for creative approaches to diversity and Tracy Phillips’ emphasis on amplifying underrepresented voices round out this impactful reflection.

She invites listeners to share their unique perspectives on inclusive research. The episode concludes with a heartwarming note on the annual Christmas toy giveaway for pediatric clinical trial participants, reminding us that every voice, no matter how young, matters.

Every voice has the power to change the world.

 
Must-Hear Insights and Key Moments

• The Impact of Inclusive Research: Recap of how inclusive research transforms healthcare outcomes, with actionable insights shared by past guests like Joseph Frazier and Fannie Johnson.
• Overcoming Mistrust in Clinical Trials: Practical strategies from Fannie Johnson and Tracy Phillips on building trust in underserved communities.
• Passing Down Knowledge: Guests like Joseph Frazier and Jen Lothridge emphasize the critical role of sharing health knowledge to empower future generations.
• Community-Centered Approaches: Dan Sfera highlights the importance of creativity, word-of-mouth outreach, and genuine community connections in achieving true diversity.

Words of Wisdom: Standout Quotes from This Episode

• "Passing down knowledge to empower future generations with vital health information is crucial." – Renarda Jones
• "Building trust between researchers and communities is key to achieving better health outcomes." – Renarda Jones
• "Amplifying every voice is how we drive meaningful change in healthcare outcomes." – Renarda Jones

Follow Dr. Ren:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Real change starts when every voice is heard.

In this episode of Voices of Inclusive Research, Renarda Jones welcomes Tracy Phillips, a dedicated advocate for inclusion in clinical trials. Tracy shares her deep insights into the critical role genuine representation plays in transforming clinical research and ensuring no community is left behind. She emphasizes the importance of intentional outreach, offering thoughtful strategies to bridge the gaps in underrepresented communities and make clinical research more equitable and impactful.

This conversation is packed with actionable insights, offering a practical roadmap for researchers, healthcare professionals, and advocates who are committed to making a difference. Tracy’s perspective on amplifying every voice in clinical research reminds listeners that true inclusivity is not just an ideal but a necessity for driving meaningful change and delivering better healthcare outcomes for all.

If you’re looking to be inspired and equipped with ideas to break down barriers in clinical research, this episode is a must-listen. Tracy and Renarda challenge the status quo and call for bold, innovative steps to ensure everyone’s voice is heard and valued in the research landscape. Listen now to join the conversation, spark meaningful change, and help shape a more inclusive and equitable future in clinical research. This episode isn’t just about learning—it’s about being part of a movement that transforms how research connects with the world.

Must-Hear Insights and Key Moments

• The Power of Support Networks: Tracy Phillips emphasizes the importance of a reliable support network during critical health challenges. His journey revealed the true nature of his relationships, showing who genuinely stood by him in tough times.
• The Importance of Advocacy and Research: Tracy’s story highlights the need for patients to be their own advocates by conducting thorough research and asking questions. He stresses that understanding treatment options, side effects, and clinical trial opportunities is crucial for informed decision-making.
• Stress and Healing: Tracy underscores the detrimental impact of stress on health, particularly for individuals managing conditions like multiple myeloma. He advocates for setting boundaries with stressful individuals and environments to create a healing space.
• Challenges in Clinical Trial Access: Tracy shares his frustration with being disqualified from clinical trials after starting medication. He stresses the need for better education for newly diagnosed patients about trial eligibility and timing.
• Gratitude and Perspective: Despite his diagnosis, Tracy maintains a sense of gratitude and humor, finding silver linings in his experience, such as deeper connections with loved ones and an appreciation for life.
• The Role of Healthcare Providers: Tracy's journey reveals the gaps in communication between healthcare teams and patients, particularly in providing clear, actionable guidance. He calls for more collaboration between healthcare providers and clinical researchers to inform patients about trials early in their diagnosis.

Follow Dr. Ren:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

Sometimes the best innovations come from just figuring it out as you go.

In this Voices of Inclusive Research episode, Renarda sits down with Dan Sfera, the trailblazing "Clinical Trials Guru" and a seasoned research site owner. Dan opens up about his unplanned journey into clinical research, sharing the highs and lows that shaped his two-decade-long career. From his early days struggling as a pre-med student to becoming a go-to expert in the field, Dan’s story is one of resilience, creativity, and learning on the fly.

Dan emphasizes the power of community engagement, the impact of word-of-mouth recruitment, and the need for innovative approaches to make clinical trials more inclusive. He highlights the value of genuine relationships with study participants, revealing how these connections can drive recruitment and retention, especially within underrepresented communities.

This episode is packed with Dan’s candid insights on breaking away from industry norms, challenging the status quo, and focusing on people, not just processes. It's a must-listen for anyone interested in transforming the clinical research landscape by putting communities first and embracing change.

Must-Hear Insights and Key Moments

• Unconventional Path: Dan shares his unexpected journey into clinical research, detailing how he went from pre-med aspirations to becoming a prominent site owner and educator in the industry.
• Importance of Community Engagement: Dan highlights the effectiveness of engaging directly with local communities, emphasizing that trust and word-of-mouth are essential for successful recruitment, especially within diverse populations.
• Innovation in Patient Recruitment: Dan advocates for creative recruitment strategies, like leveraging community influencers or “super recruiters” within specific communities, to boost diversity and trust in trials.
• Addressing Diversity in Clinical Trials: Through personal anecdotes, Dan stresses the need for diverse site ownership and patient recruitment strategies, calling for practical, people-centered solutions over bureaucratic approaches.
• Challenging the Status Quo: Dan encourages the industry to break away from traditional, risk-averse models, advocating for bold ideas and real accountability to improve inclusivity and community-centered research.

About Dan Sfera

Dan Sfera is a visionary leader and influential figure in the clinical research industry. With over 15 years of experience, he has dedicated his career to advancing clinical trial practices through innovative strategies and knowledge-sharing. Known for his commitment to site-centric solutions, Dan has been a driving force in enhancing research methodologies to support clinical researchers since 2005. His focus remains on optimizing patient engagement, empowering site operations, and ensuring the highest standards in clinical trials.

Connect with Dan Sfera:

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We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!