Caregivers See the Gaps That Research Misses with Stephanie Monroe

Voices of Inclusive Research

“Don’t come into someone’s home for a party without bringing a gift.” – Stephanie Monroe

In this episode of Voices of Inclusive Research, Dr. Renarda Jones sits down with Stephanie Monroe, advocate and community leader, for an empowering conversation about what true inclusion in clinical research really looks like.
Stephanie shares her perspective on patient-centered care, and why small but vital supports like patient navigators, and trusted advocates make or break participation in clinical trials.

Stephanie illustrates how cultural context and grassroots leadership drive engagement and retention in trials. She also calls out the responsibility of pharmaceutical companies and academic centers to prioritize representation, diversify advisory boards, and honor the wisdom of patients and caregivers in shaping research.

🎧 Tune in for an honest and practical discussion about equity, advocacy, and the power of community to transform health outcomes.

Must-Hear Insights and Key Moments

• Trust Is Earned, Not Assumed – Real partnerships take time, presence, and respect.
• The Details Make the Difference – From parking access to navigation support, small barriers can make or break participation in a clinical trial.
• Representation Creates Belonging – When diverse voices sit on advisory boards, communities see themselves reflected and valued in research decisions.
• Equity Is About People – Clinical research isn’t only about data or science—it’s about families, caregivers, and communities who deserve care and inclusion.

Words of Wisdom: Standout Quotes from This Episode

• " They don't need a savior, they don't need someone parachuting in. You need to ask them" – Stephanie Monroe
• " You don't come into someone's home for a party without bringing a gift." – Stephanie Monroe
• " Don't be ashamed to include other people." – Stephanie Monroe
• " Knowing the community that you want to touch is so important" – Dr. Renarda Jones
• " Prevention is huge. " – Dr. Renarda Jones

About Stephanie

Stephanie J. Monroe is Vice President and Senior Advisor of Health Equity and Access at UsAgainstAlzheimer’s, where she leads the Center for Brain Health Equity and directs African Americans Against Alzheimer’s—the first national network addressing the disease’s disproportionate impact on African Americans. Through national, local, and strategic partnerships, she raises awareness of disparities, advocates for inclusive clinical trials, and promotes brain health in at-risk communities.

An attorney with three decades in federal policy, Monroe previously served as Assistant Secretary of Education for Civil Rights and spent 25 years on Capitol Hill in senior staff roles, including Chief Counsel of the Senate HELP Committee. She also serves on the National Academy of Sciences Board for Children, Youth, and Families and advises institutions on strategies for inclusive participation in clinical research.

Follow Stephanie Monroe:

• Website

Follow Dr. Ren:

• Website
• Instagram
• LinkedIn

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!

Chapters

1. Introduction and Guest Overview (00:00:00)

2. Stephanie's Background and Career Journey (00:01:28)

3. Advocacy and Legislative Work (00:02:02)

4. Personal Story and Alzheimer's Advocacy (00:06:51)

5. Challenges in Alzheimer's Research and Diversity (00:11:21)

6. Addressing Racial Disparities in Alzheimer's Research (00:19:49)

7. The Importance of Accurate Data Reporting (00:20:14)

8. Lifestyle Changes for Alzheimer's Prevention (00:21:22)

9. Advocacy and Community Support (00:22:36)

10. Final Thoughts and Call to Action (00:29:17)