Researchers Make Strides in Diversifying Medical Studies for Better Data
Researchers are taking steps to address the lack of diversity in medical studies in an effort to obtain more accurate and representative data. By building trust in communities that have long been excluded from scientific research and collaborating with doctors and patients of color, scientists are designing better studies that include a wider range of participants. These efforts, such as opening research sites in diverse communities and providing stipends to cover expenses like gas and child care, are already yielding results with more people of color participating in medical research.
The inclusion of diverse populations in clinical trials is essential for ensuring that healthcare treatments and prevention measures are effective across different backgrounds. Previously, data from clinical trials often failed to include significant portions of the population, limiting the understanding of diseases and their treatments. However, as more diverse data sets are incorporated into research, the potential for better treatments and disease prevention in people of all backgrounds increases.
Dr. Carol Horowitz, director of Mount Sinai’s Institute for Health Equity Research, emphasizes the importance of diversity in medical research: Without diversity, we lose the ability to address fundamental problems that lead to suffering and loss of life. Dr. Horowitz and her team are collaborating with community doctors and patients of color to develop pulse oximeters that accurately measure blood-oxygen levels for individuals with different skin tones. Recent research revealed that these devices were less accurate for certain Black, Hispanic, and Asian patients during the pandemic.
To address these issues, Horowitz and her team are conducting surveys to gauge awareness of the limitations of pulse oximeters and working towards informing doctors and patients about these limitations. They are also recruiting a diverse group of volunteers to test new oximeters. Additionally, Horowitz and her colleagues have been working with local doctors and parents of color to ensure a more diverse group of families is included in a study assessing the value of genetic sequencing for newborns. Recommendations from parents, such as simplifying recruitment materials and hiring more recruiters of color, were incorporated into the revised study design, resulting in a study that includes a significant proportion of Black and Hispanic families, as well as low-income households.
The impact of diversity in medical research is evident in the field of genetics as well. Geneticists studying cancer in people of African ancestry identified ancestry-related mutations that could greatly influence the aggressiveness of the disease and its response to treatment. Previously, it was believed that studying just one population could provide insights into the drivers of cancer, but the research highlighted the significance of understanding diverse genetic backgrounds.
Efforts to diversify medical studies have been ongoing for years, with Congress mandating in 1993 that the National Institutes of Health include more women and people of color in studies. However, progress has been slow until the events following George Floyd’s murder in 2020 sparked a nationwide reckoning on racial inequality. Since then, the demographics of clinical-trial participants have seen some improvement, with the percentage of white participants decreasing from 84% in 2011 to 75% today. The Food and Drug Administration is also preparing guidelines that will require drugmakers to outline their strategies for recruiting diverse patient pools for advanced clinical trials.
Pharmaceutical companies like Pfizer and Johnson & Johnson are contributing to the efforts by opening new clinical-trial sites in diverse areas and conducting studies solely focusing on people of color. Pfizer’s expansion includes opening sites in Brownsville, Texas, while Johnson & Johnson released study results on the effectiveness and safety of a psoriasis drug in individuals of all skin tones.
Dr. Felix Olale, chairman of MedGenome, a genetic-research company, underscores the importance of representation in research, stating, Good representation is good science. It really helps all of us. The genetic data collected by MedGenome from various countries is being utilized by U.S. drugmakers for the development of treatments for rare diseases.
Building trust and relationships with marginalized communities is crucial for researchers seeking to engage with populations that have historically been neglected or exploited. Dr. Donald Warne, co-director of the Johns Hopkins Center for Indigenous Health, advises establishing connections with elders and community health workers in indigenous communities before conducting research. This approach ensures that researchers are received with open arms and paves the way for more successful collaborations.
Ayanna Molina, a Black woman who initially had reservations about the medical system, was inspired to participate in a clinical trial studying the efficacy of MDMA-assisted therapy for PTSD after experiencing a suicidal depression. Researchers addressed her concerns and provided financial support for expenses related to the trial. Although she later discovered she had received a placebo, the intensive therapy and support she received were transformative.
The involvement of patients of different racial and ethnic backgrounds is paramount in studies addressing conditions like PTSD, which disproportionately affect communities of color. The importance of reimbursement for expenses like lost wages, child care, and transportation was emphasized by patients of color, leading to the successful recruitment of a diverse range of participants for the study. The findings of the study demonstrated that MDMA-assisted therapy effectively alleviated PTSD symptoms.
Ensuring diversity in medical studies requires intention and active measures. By addressing the historical lack of representation, researchers are making progress towards obtaining more accurate data and developing treatments that are effective for all individuals. The increased inclusion of diverse populations in research not only improves the scientific understanding of diseases but also fosters trust and equity in healthcare.
