Webinar: Engaging Historically Underrepresented Members of the African American/Black Communities in Clinical Trials
Wednesday, December 7, 2022 | 11 AM - 12 PM CST
PART 10 OF CHI’S 10-PART SERIES: FROM RESEARCHER TO PATIENT - MAKING CLINICAL TRIALS MORE DIVERSE
Developing strategies to engage clinical trial participation in underrepresented groups will require a thorough understanding of past challenges, current attitudes, and future implications. Almost 50 years after the unethical research practices in the Tuskegee Syphilis study caused public outrage, remnants of mistrust among African American/Black communities continue to impact confidence in clinical trials. Despite decades of reforms aimed at establishing basic research standards and protecting the rights of trial participants, African American/Black communities remain underrepresented in clinical trials. In a 2020 FDA report on clinical trials resulting in 53 novel drug approvals, African Americans represented only 8% of U.S. clinical trial participants despite comprising 13% of the U.S. population. Across therapeutic areas, the gap between the disease population and trial representation widens. For example, in multiple myeloma (MM) oncology trials, a disease in which Black Americans account for approximately 20% of annual cases, the median percentage of Black Americans enrolled across 21 pivotal trials was just 4.5%. Strategies for proportional clinical trial representation must address cultural barriers to enrollment and improve upon outdated recruitment and retention practices. Increasing African American/Black participation in clinical trials ensures that treatments are adequately tested in populations to whom it will be marketed. Increased diversity in clinical trial populations can also yield racial and ethnic differences in disease progression and drug response across demographic groups.
By convening many of the country’s leading clinical trial and diversity experts, physicians, scholars, authors, and key opinion leaders, this program will provide best practices, new insights, and novel trends in building a more diverse and inclusive clinical trial ecosystem in the U.S.
Series Host
Dr. Neelum Aggarwal, MD
Professor, Department of Neurological Sciences, Rush Alzheimer's Disease Center at Rush University Medical Center
Dr. Neelum T. Aggarwal, MD, is the Chief Diversity Officer at American Medical Women’s Association and Associate Professor, Departments of Neurological Sciences and the Rush Alzheimer's Disease Center at Rush University Medical Center. She is the Senior Neurologist for the Rush Alzheimer’s Disease Center (RADC), Research Director at the Rush Heart Center for Women, and serves as the Principal Investigator and Site Principal Investigator for multiple NIA funded research studies and consortia led clinical trials. Her work focuses on how sex, gender and social determinants of health are associated with risk, detection and treatment of cognitive changes associated with dementia. Dr. Aggarwal is a long-standing voice for community based research, clinical trial participation, public health initiatives, both in Chicago and nationally. She serves as the Chief Diversity and Inclusion Officer for the American Medical Women’s Association (AMWA), and was past chair of the Governing Council of the American Medical Association- Women's Physician Section.
Currently, she co chairs the Inclusion, Diversity and Education in Alzheimer's Disease - Outreach and Policy subcommittee and the Advisory Group on Risk Evidence Education for Dementia. As the Strategic Advisor for the Science Runway, a Chicago Innovation Mentor (CIM) and past National Chair for the Women in Bio Mentoring, Advisors and Peers Committee, she is uniquely positioned to work with diverse groups of colleagues, mentor and sponsor women and men in the medical, life sciences and STEM sectors. She completed her medical degree from the Rosalind Franklin University - Chicago Medical School, completed her neurology residency at Henry Ford Hospital in Detroit, Michigan, and completed an aging and neurodegenerative disorders fellowship at the Rush Alzheimer’s Disease Center.
DISTINGUISED PANELISTS
Ms. Nicole Bettè
Senior Human Factors Engineer, embecta
Nicole Bettè is a Human Factors Engineer who has been working with usability in medical devices since 2011. She holds a Bachelor's degree in Biomedical Engineering with a concentration in biomechanics and an international minor for engineers from the University of Michigan, Ann Arbor. In addition, she took graduate-level coursework in Design Thinking and bionanotechnology from the Royal Institute of Technology in Stockholm, Sweden. Throughout her career, Nicole has worked with a variety of medical devices including space health care technologies, global health technologies, cardiac care, life-sustaining systems, drug delivery systems, wearable devices, point-of-care testing devices, among others. Meanwhile, she has been learning, developing, and implementing user-centered strategies in order to drive innovation and inclusion both at the corporate level and at the product development level.
Nicole's professional interests within Human Factors Engineering are all centered around people and include: user-centered design (UCD), human-centered design (HCD), empathetic design, user experience (UX) design, inclusive design, universal design, accessible design, cross-cultural design, ethnographic research, design thinking, human systems integration (HSI), and diversity, equity, belonging, and inclusion (DEBI) in the workplace.
Dr. Doris Molina-Henry, PhD
Assistant Professor of Research Neurology, University of Southern California Keck School of Medicine
Dr. Doris Molina Henry obtained B.S. in Biology from Elon University in North Carolina, followed by her Ph.D. in Neurobiology and Anatomy from Wake Forest School of Medicine. She began her work in Alzheimer’s disease and clinical trials as an affiliate faculty member to the Wake Forest Alzheimer’s Disease Research Center. She later completed advance training in clinical trials as a fellow for the Institute on Methods and Protocols for the Advancement of Clinical Trials in ADRD in 2020. Dr. Molina Henry is currently an Assistant Professor in the Department of Neurology at the University of Southern California’s Keck School of Medicine. She is a faculty member within the Alzheimer’s Therapeutic Research Institute and part of the Recruitment and Retention Unit Leadership for the Alzheimer’s Clinical Trials Consortium. Her research focuses on the exploration and evaluation of recruitment and retention strategies and outreach programs to support engagement and participation of underrepresented groups in Alzheimer’s disease clinical trials.
Ms. Leonore Okwara, MPH
Founder, Association of Black Researchers (ABR)
Leonore Okwara, MPH is the Founder of the Association of Black Researchers (ABR), a 501c3 nonprofit organization that serves as a central resource to inform, support, and advance a multidisciplinary community of Black Researchers. ABR was established to improve research-community partnerships, increase accessibility to information and resources, and build academic and professional capacity within the Black community. Leonore is also a Research Program Manager at Johns Hopkins University. In this role, she manages research-related contracts and regulatory activities. Over the past two decades, she has served in a research program management capacity within the nonprofit, academic, and government sectors. Leonore has coordinated dozens of single and multisite clinical and behavioral health-related research projects focused on cancer, tobacco, mental health, asthma, women’s health, and rare conditions. She has cultivated equitable partnerships between researchers and the community, and organized events that focused on addressing community mistrust in research. Because of this experience, Leonore understands the importance of bringing researchers together to share best practices, strategies, and lessons learned with future researchers. Leonore received her Master of Public Health in Epidemiology from Eastern Virginia Medical School.
Ms. Gelise Thomas, JD, MS
Assistant Director, Strategic DEI & Health Disparities, Case Western Reserve University
Gelise Thomas (she/her) is an unrelenting advocate for equity in biomedical research and healthcare. An attorney by trade and storyteller by nature, her ability to mesh strategy, innovation, and coalition-building frame her curiosity-laden, relationship-first approach to solving for some of society’s most urgent problems. With a decade of experience in multiple sectors, including: government relations, law, economic and community development, healthcare/research, and communication, she appreciates growth opportunities rooted in unconventional collaboration.
In 2022, Gelise joined the Clinical and Translational Science Collaborative at Case Western Reserve University as their inaugural Assistant Director, Strategic DEI & Health Disparities. She curated and launched a four-part, interdisciplinary, multimedia Mission: Health Equity Challenge Series that featured film screenings and discussions about the Smithsonian Channel and HARPO Production’s The Color of Care documentary and an eight-week book discussion about Why Are Health Disparities Everyone’s Problem? by Lisa Cooper, MD, MPH. Prior to that, she led diversity, equity, and inclusion strategy for University Hospitals Clinical Research Center and worked in economic development at MidTown Cleveland, Inc.
Gelise earned a J.D. and M.S. in Health Sciences from Cleveland State University and a B.A. in Political Science from The Ohio State University. She is licensed to practice law in California and D.C. Gelise is a Cleveland Leadership Center board member, NIH RECOVER (Researching COVID to Enhance Recover) Initiative Health Equity, Patient-Reported Outcomes, and Community Engagement committee member, and 2022 Crain’s Cleveland Business 40 Under Forty honoree.
Ms. Rochonda Woodard
Senior Federal Engagement Owner, Cerner Corporation
Ms. Rochonda Woodard is a 17+ year healthcare and business operations thought leader currently serving as Managing Consultant and Advisor in Washington, DC. Rochonda holds a Bachelor of Science in Healthcare Administration and Biology from Eastern Michigan University and Graduate Studies in Nursing Operations and Healthcare Management. Rochonda is currently pursuing a secondary graduate degree in Business Administration. Ms. Woodard holds several professional certifications in leadership, process Improvement, population health, with completed graduate certifications in Diversity, Equity and Inclusion (DEI) from University of South Florida and Women's Entrepreneurship at Cornell University. In her current role, Rochonda provides process improvement strategy to healthcare organizations globally undergoing clinical transformation. She is responsible for Program and Policy Implementation, coaching both C-Suite Executives, Providers and various levels of healthcare leadership championing clinical efficiency, patient engagement, relationship management and technology to push the needle forward towards better patient outcomes and health system operations. Rochonda continues to serve in various capacities within the non-profit sector acting as a consumer -patient advocate for minority healthcare access, programming, and foundation fundraising. She has led many initiatives to highlight health disparities in BIPOC communities to help individuals evolve, expand and develop, promote health education, engage community and bridge relationship gaps in healthcare access. Her most recent work Mind your Womb; was a discussion series created to highlight the highs and lows of Black Maternal Health, Fertility and self-advocacy in minority communities. Rochonda has been featured on The Career Salon, Teatime w/Monica, MSNBC news and a variety of media outlets sharing words of wisdom for personal and professional growth globally. From Coach to Advocate, Rochonda is a proven yet credible relationship and resource builder who prides herself on successfully connecting the right people with the right information at the right time.
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