For people living with kidney disease, clinical trials can offer hope—but not without questions or concerns. Today, we talk with Dr. Nadine Barrett, Glenda Roberts, and Luz Baqueiro about lived experience, community trust, and the power of being asked. In this episode we heard from: Dr. Nadine J. Barrett is a Professor in the Department of Social Sciences and Health Policy in the Division of Public Health Sciences and the inaugural Senior Associate Dean of Community Engagement and Equity in Research at Wake Forest School of Medicine, she is Associate Director of Community Outreach and Engagement for Wake Forest Comprehensive Cancer Center, the Clinical Translational Science Institute and the Maya Angelou Center for Health Equity. Prior to joining Wake Forest, Dr. Barrett served 13 years in senior leadership roles at Duke University, as the Founding Director of both the Duke Center for Equity in Research and the nationally awarded, Duke Cancer Institute's Office of Health Equity. She is also President of the national Association of Cancer Care Centers, in Washington DC. A medical sociologist by training, Dr. Barrett is a health disparities researcher, expert equity strategist, and a nationally recognized leader in facilitating authentic community, healthcare, and academic partnerships to advance health equity. She develops multi-level interventions to address implicit bias, structural and systemic racism, and inequities that limit access to quality research and trustworthy health care among underserved and marginalized populations. Dr. Barrett brings an equity lens to her work and collaborations to enhance healthcare systems, close the disparities gap in health outcomes, and increase diverse and broad representation in research participation and the research workforce. Glenda Roberts: Prior to joining the Mount Sinai Center for Kidney Disease Innovation as the Director of Communications and Patient Engagement, Glenda V. Roberts was an Information Technology executive with over 35 years of experience with top-caliber corporations, including General Electric, Microsoft and Johnson & Johnson. She was also the Executive Director of the Seattle Transplant House, and the Director of External Relations & Patient Engagement at the University of Washington Center for Dialysis Innovation (CDI) and the Kidney Research Institute (KRI). Before going on dialysis, Glenda managed the progression of her disease for over 40 years using diet and exercise. Since her transplant in 2010, she’s completed nine half marathons. Based upon her personal experience with kidney disease, Glenda is a passionate activist for kidney research and patients living with kidney disease. She’s involved in myriad patient-centered national and international health care transformation initiatives. All are focused on addressing patient preferences and improving patient-reported outcomes. Glenda brings the patient voice to several NIH/NIDDK government and industry research efforts (Kidney Precision Medicine Project, APOLLO), as well as the American Society of Nephrology’s Current & Emerging Threats (C-ET) Steering Committee. She’s the inaugural co-chair of the Critical Path Institute’s Biomarker Data Repository Governance Committee, and a member of the Kidney Health Initiative (KHI) Board of Directors. Additionally, she contributes to the Advisory Boards of LifeCenter Northwest and Home Dialyzors United, and over 15 other industry and academic research advisory committees/boards focused on transplantation, kidney, cardiovascular, and metabolic health. As an ambassador for the National Kidney Foundation, the American Kidney Fund, and the American Association of Kidney Patients, Glenda’s advocacy tirelessly advances the voices, needs, and aspirations of the kidney community worldwide. Luz Baqueiro serves as a patient advocate with the National Kidney Foundation (NKF), providing feedback and helping develop new initiatives to better support the Latin American community affected by chronic kidney disease. She also raises awareness of the barriers faced by patients living with renal failure while educating and supporting her community in Georgia. In 2019, Luz was diagnosed with end-stage renal disease (ESRD). With limited resources in Georgia, she relied on emergency in-hospital dialysis for a year. In August 2021, through self-determination, self-education, and the support of her family and community, she received a kidney transplant. Additional Resources Clinical Trial Information Hub What is a Clinical Trial? Are Clinical Trials Safe? Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.
