Lack of Inclusive Data and Low Trust Remain Barriers to Advancement of Health Equity
On Thursday, June 16, 2022, the Clinical and Translational Science Collaborative (CTSC) hosted a REAL (Racial Equity and the Law) Talk webinar, titled Clinical Research Law and Policy, with the Cleveland Metropolitan Bar Association. Gelise Thomas, Assistant Director, Strategic DEI & Health Disparities with the CTSC, Dr. Greg Hall, Medical Director, UH Cutler Center for Men at University Hospitals and Executive Director, National Institute for African American Health, and Ashley Lynn Keith-Phillips, Assistant General Counsel, University Hospitals provided diverse perspectives about the importance of research in eliminating health disparities and how they advance health equity through their work.
Dr. Hall started the program with his segment that focused on health disparities. A professor at Northeast Ohio Medical University (NEOMED), Dr. Hall asked the audience if they could guess which life expectancy matched with each race or ethnicity, an exercise he does with medical students. “There is work to be done with all populations, but African Americans have the lowest life expectancy at 74.8 years,” Dr. Hall confirmed. He emphasized that this matters because life expectancy for everyone has room for improvement. Dr. Hall added that, “The pandemic has given us even more data in terms of life expectancy. Pandemics contribute to dips in life expectancy. We see a large dip in 1919 (influenza) and we’ll see another dip from 2019 (COVID-19)—100 years later.”
What contributes to life expectancy differences? Heart disease, cancer, violence, diabetes, etc. Dr. Hall shared that African Americans have the worst outcomes for breast, prostate, and ovarian cancer. He explained that white women have a higher rate of breast cancer, but black women have higher mortality. “That shouldn’t happen. It’s because of the biology of breast cancer in Black women, but why is that? Research is how we’ll get that answer.” said Dr. Hall.
If African Americans avoid being involved in research, then they’re also not benefiting from nuanced information that comes out of research Dr. Hall explained. “We’re in the dark if we’re unable to measure differences,” Dr. Hall remarked. He teaches a class on hypertension at NEOMED. One of his lectures explores drugs for hypertension that should be prescribed to African Americans versus those prescribed for other races and ethnicities and how if the wrong hypertension medication is prescribed, there are dire consequences.
Thomas talked about different types of research and recent laws and policies centering the importance of and relationship between scientific advancement as it relates to diversity, equity, and inclusion in clinical research. She began her segment with a poll to gain an understanding of whether primary care physicians (PCPs) have talked with attendees about clinical research or whether they’ve participated in clinical research. Most responded that their PCPs haven’t talked about clinical research with them and that they hadn’t participated in clinical research.
Within the past few years law and policy has been passed or presented that illuminates the importance of diversity, inclusion, and equity in clinical research. Thomas highlighted the Henrietta Lacks Enhancing Cancer Research Act and DIVERSE Trials Act and their potential to fuel overdue progress in this space—acknowledging the connection between continued health disparities and lack of data, informing best practices, that recognizes gaps in current knowledge for underserved populations.
Keith-Phillips answered general questions about research participation and focused on legal framework in place to protect participants. One question from the audience was how to assess whether a clinical trial is credible with the recent uptick in invitations and advertisements. Keith-Phillips said, “Go to www.clinicaltrials.gov.” ClinicalTrials.gov allows prospective participants to search for recruiting and not yet recruiting studies, by condition or disease, other terms (e.g., drug name), and/or country. Each study profile includes the name of the study sponsor (company or institution funding the study), study details including a brief summary, study type, start and completion date, study contacts, and more.
Click HERE to view the webinar in full.
- Health Equity
- Clinical Research
Case Western Reserve University
CTSA Program In Action Goals
Goal 1: Train and Cultivate the Translational Science Workforce
Goal 2: Engage Patients and Communities in Every Phase of the Translational Process