Medicine & Research

Historically, many communities have been underrepresented in research, including those from racial and ethnic minorities, older adults, rural communities, people with disabilities, and the LGBTQ+ community. In the 20th century, disadvantaged groups were exploited for research. This has led to distrust of the medical community and clinical research in many communities, especially those of color. 

Equity and inclusion

People may experience the same disease differently. This is certainly true of multiple sclerosis. Different people may also have different reactions to the same treatment based on factors such as age, gender, weight, race, ethnicities, and others. Therefore, clinical trials must include people with a variety of lived experiences and living conditions. 

Diversity, equity, and inclusion encourages the representation and participation of diverse populations, including those of varying gender identities, races, ethnicities, religions, socioeconomic populations, cultures, and sexual orientation. Inclusion refers to the behaviors and practices that ensure those individuals and groups are valued, enabling diversity to flourish. Equity ensure that everyone have equal access to the same opportunities regardless of background or identity. 

Equity in clinical trials means the participants represent those who are most likely to have the health condition or need the treatment the trial is testing. Health disparities across communities have been the source of gaps in science and the development for life-saving treatments for everyone. It is essential to have as a wide range of people from different communities to participate in clinical trials as possible to reduce biases, promote social justice and health equity, and help foster better science. 

Diversity in clinical research

Diversity refers to the traits and characteristics of all people, making it vital in clinical trials for many reasons. It ensure the evidence gathered will be widely applicable to the population that will use the treatments. Historically, clinical trials did not always recruit participants who represented the individuals most affected by a particular disease or condition. 

Often, these clinical trials relied almost exclusively on white male study participants. This shortcoming has created gaps in understanding of diseases and conditions, preventative factors and treatment effectiveness across populations. These knowledge gaps lead to bias in the quality of healthcare decision-making, the ability to counsel people on risk reduction, optimal treatment responses, and the development of more effective medications and interventions. 

Diversity in participation helps researchers identify differences in effectiveness and safety across various demographic groups, potentially identifying important variations in treatment responses based on factors such as age, ethnicity, and gender. This inclusive approach may lead to the development of more effective and targeted therapies, addressing health disparities and promoting equity in medical advancements. 

Researchers need to carefully weigh their inclusion or exclusion criteria for clinical trials. For example, a clinical trial excluding participants with high blood pressure or other comorbities may end up excluding many people older than the age of 65, who are more likely to have these conditions. The trial may then underrepresent these groups in the study that make the results less applicable to those who may find benefit most from the findings. 

Addressing the challenges

One group addressing the challenge of diversity in the clinical trials is Accelerated Cure Project, a nonprofit organization working on improving the health, healthcare, and quality of life for all affected by MS. ACP also focuses on inclusive engagement in research, working collaboratively to understand and address the barriers to participation for members of these groups. The organization founded the MS Minority Research Engagement Partnership Network in 2016 to bring together a wide range of stakeholders, including advocacy partners, researchers, industry representatives, and people with MS from minority communities.  

Its members share what has been learned about the barriers to research participation and develop solutions to overcome them. Among other initiatives, they've developed toolkits for healthcare providers and researchers to guide them on how to engage people affected by MS from historically marginalized populations in research. ACP also leads the Research Inclusion Diversity and Equity Council, comprising of 30 members with MS from traditionally underrepresented groups, including Black/African American, Hispanic/Latinx, indigenous peoples, the LGBTQ+ community, Southeast Asian people, people with disabilities, rural communities and veterans. 

RIDE Council guide ACP on increasing the diversity of the iConquerMS network and provide resources to other research initiatives seeking to diversify their study participation. Clinical trials must include people with a variety of lived experiences and living conditions. Trials with diversity can generate novel scientific insights, imrpove the quality of clinical data, and increase public confidence in new treatments - particularly among underrepresented communities. To create diverse, equitable, and inclusive clinical trial research, more work is essential.