Diverse Research Saves Lives
by Sheila Velagapudi
The topic of diversity and inclusion in the workplace and in research has been discussed for decades. The need to improve these initiatives has gained even more attention as recent events and studies have highlighted many disparities such as those in healthcare. Many factors contribute to disparities in healthcare and clinical research, all of which lead to very real consequences.
The disparities in pregnancy-related mortality are an example of where more inclusive research practices could prevent deaths and improve outcomes. According to the CDC, Black women with at least a college degree have a pregnancy-related mortality rate that is 5.2x that of their white counterparts, and overall, Black and Native American women have 2-3x higher pregnancy mortality rates compared to white, Asian, and Latinx populations. Research funded by the CDC found that several factors contributed to these disparities, including differing access to appropriate and high-quality care, missed or delayed diagnoses, and a lack of knowledge about warning signs of pregnancy-related complications from both the patient and provider.
The data also suggested that 60% or more of pregnancy-related deaths across all ethnicities could have been prevented by addressing these factors(1). This research has been critical in determining how to address and decrease the pregnancy-related mortality rate for all women but especially for those disadvantaged by their race.
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Because some diseases are far more prevalent in certain ethnic groups, including a diverse population in clinical studies is crucial to conducting high-quality research. For example, Black, Latinx, and Native American populations suffer higher rates of obesity, cancer, cardiovascular disease, asthma, and other diseases compared to their white counterparts, but the majority of participants in studies related to these diseases are white. Including ethnic groups in these studies would allow for more efficacy and safety during treatment and care for all races and ethnic groups.
There are, however, challenges present when attempting to include ethnicities that were historically excluded into new studies. These challenges include ineffective communication, lack of trust in research, and practical factors such as time commitment. Even once the messages about clinical trials are communicated, issues such as inclusion and exclusion criteria may also make it difficult to recruit and enroll potential participants(2).
To enhance this process and increase minority participation, it is crucial for researchers to practice cultural humility. The term “cultural humility” refers to the ability to be respectful of other cultures and lifestyles and to be willing to learn and adjust accordingly. Minority groups have been shown to be more likely to participate when researchers engage in the community, increase community knowledge and awareness of clinical research, and tailor their recruitment strategies, so cultural humility is considered essential to recruit participants and make them feel safe and welcome during the clinical research process. A researcher should understand and be empathetic of the needs of various groups and adjust studies and recruitment accordingly to fully engage different communities to bridge the racial gap in clinical research(2).
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There are some challenges and limitations involved when collecting and using race-based data to make assumptions and improvements in healthcare. For example, while self-reported race is the most reliable and many researchers’ preferred data, race is just one trait to take into account. There are other factors involved in health outcomes including socioeconomic and cultural differences within racial groups, and foreign or U.S. born ethnic differences which complicates generalizations made about specific ethnic groups(3). Therefore, a large and diverse group of people needs to be studied to determine how each factor (race, socioeconomic status, culture, U.S. or foreign born) affects clinical research outcomes and disparities in healthcare.
Overall, inclusive research is necessary for effective healthcare for all, and Design Science takes the initiative to include a diverse pool of participants in our usability studies. Design Science finds participants through multiple sources such as online groups, community events, and healthcare facilities to reach a wide audience from all backgrounds and experience levels with medical devices. The inclusion effort ensures Design Science can partner with both small and large medical device and pharmaceutical manufacturers to develop safe and effective medical devices using collective research that is representative of and beneficial to the entire patient population.
Racial and Ethnic Disparities Continue in Pregnancy-Related Deaths.CDC, 2019.
Wilkins, C. Villalta-Gil, V. Humility, Empathy Required to Create Inclusive Research Culture. AAMC, 2017.
Leonard, E. Race, Ethnicity, Culture, and Disparities in Health care. Journal of General Internal Medicine. 2006.
