Diversity among research participants has long been a challenge. Women, ethnic minorities, people with disabilities and those with social and educational disadvantages are just a few of the many historically underrepresented populations in research studies.
Recognizing the perils of this diversity imbalance, the National Institutes of Health took steps through the Revitalization Act of 1993 to mandate the inclusion of minorities and women in all NIH-funded research. They noted the purpose of research is to provide the scientific evidence that could lead to changes in the standard of care or health policies.
But without including diverse populations in research, the results of studies cannot be generalized to these groups. This lack of diversity raises the risk that treatments recommended based on data from one population may not be as effective, and may in some cases be harmful to other populations, creating a situation that worsens existing health disparities.
In alignment with our mission to accelerate transdisciplinary research that improves the health and well-being of children everywhere, The Children’s Mercy Research Institute (CMRI) is committed to ensuring participants taking part in our research studies reflect the diversity of the patients and families at Children’s Mercy. Read our commitment statement.
“Diversity in pediatric research means ensuring all children and families regardless of race, ethnicity, language, economic status, education level, ability, gender identity, or sexual orientation have an opportunity to participate in research,” says Andrea Bradley Ewing, who serves as the Director of Community Engaged Research at Children’s Mercy. “This means ensuring communities that have historically been harmed by research or underrepresented in research are adequately represented in all research so the scientific community is more aware of effective interventions and treatments that benefit all children.”
Our commitment not only involves efforts to recruit and retain diverse research participants but to also prioritize diversity and inclusion when it comes to implementing studies that enhance community engagement; promoting research that addresses health disparities; and supporting work with businesses that advance diversity, equity and inclusion practices in the communities we serve.
“In addition, our commitment to diversity in research requires that CMRI faculty and staff not only reflect the patients and families at the hospital but are also trained to conduct culturally appropriate and community-centered research,” says Casey McClain, the Clinical Research Teams Manager at CMRI.
CMRI aims to incorporate diversity and inclusion into its overall strategic plan to ensure that all patients, families, and communities benefit from the scientific breakthroughs that advance treatment and improve care. These efforts include:
- Exploring innovative and effective measures to integrate diversity throughout research through work conducted by the Inclusion and Diversity in Research Work Group.
- Ensuring all facets of work include diversity and inclusion to train the next generation of researchers and scientists (as in the Star 2.0 program).
- Engaging diverse community voices through the CMRI Community Advisory Board on the best ways to develop, implement and disseminate research
- Recruiting faculty and research coordinator/research assistant candidates from underrepresented communities.
- Recruiting and retaining bilingual research staff who are focused on ensuring non-English speaking patients and families are not excluded from research based solely on language.
- Providing resources for research teams that engage diverse research participants in their projects, like the translation of study documents provided by the Office of Research Integrity.
- Developing mechanisms and tools to enable research teams to track and report their inclusion of diverse races, ethnicities and genders in their research projects.
Recruiting diverse populations to take part in research studies requires intentionality, which is continuously integrated through CMRI. For example, CMRI will continue to train research teams on issues of implicit bias and the link between the underrepresentation of minority communities in research and health disparities.
“CMRI’s commitment to diversity means all children and families will have an opportunity to participate in pediatric research regardless of race, ethnicity, language, economic status, education level, ability, gender identity, or sexual orientation,” says Bridgette Jones, MD, MSCR. By extension, our efforts will help ensure that traditionally underrepresented communities and those who have historically been harmed by research are appropriately represented so the scientific community is more aware of effective interventions and treatments that will benefit all children.”