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A Call to Action for Diversity in Research Studies

Written by Elaiza Torralba, Research Intern

Racial and ethnic minorities make up about 40 percent of the United States, but they are not very well represented in research studies. Researchers have pointed out that “ignoring the racial/ethnic diversity of the US population is a missed scientific opportunity to fully understand factors that lead to disease or health.”1

Research Ambassadors for Community Health (ReACH) is a program working toward achieving the goal of more minorities taking part in research studies. We aim to use community outreach actions to raise attention about the value of research, breast cancer health gaps, and how diverse participation can lead to better health outcomes for all. We hope to inspire change to have more African-American/Black, Latina/Hispanic, Asian/Pacific Islander, and Native American/Alaskan Native people team-up with us in research.

Dr. Kimlin Ashing-Giwa, director of the Center of Community Alliance for Research and Education at City of Hope in Duarte, CA, and a member of ReACH’s Diversity Advisory Council stresses that having diversity in research helps with finding more about medical treatments for all.

Take the first step toward increasing diversity TODAY by joining the Army of Women® (https://www.drsusanloveresearch.org/), a program of the Foundation that connects researchers across the nation with women and men of every age and ethnicity who are willing to participate in breast cancer research studies. Studies range from those looking at the causes of breast cancer and how to prevent it, to quality of life issues experienced during and after treatment, to drugs for prevention or treatment of metastatic breast cancer.

Another way to make an impact is learning about the Foundation’s The Health of Women (HOW) Study™ (https://www.drsusanloveresearch.org/), an online study for breast cancer. This study, open to women and men with and without a history of breast cancer, collects information through online surveys which cover a wide range of topics, including your health, your quality of life, your diet, and your family history.

Why don’t people of minority backgrounds take part in research? One reason is that researchers say they do not know how to engage a diverse population and often do not realize how much time, funding, and staff it takes to work with these groups in research.2 Other reasons contributing to health differences and low rates of participation may include but are not limited to: limited access to quality care, fear and trust problems, financial concerns, not having enough time, different cultural beliefs, and lack of access to or knowing about research.1

Dr. Susan Love Research Foundation understands these reasons but also believes that diversity in research is needed. Participation of diverse people translates to more results that apply to groups we do not have enough research about, new best ways for prevention and treatment of specific minority groups, and increased knowledge of different experiences and outcomes in breast cancer.

“If we do not include them in our research, our research findings do not apply to them, therefore cannot be useful for serving them,” said Dr. Selena Nguyen-Rodriguez, professor of Health Science and research associate at the Center for Latino Community Health, Evaluation & Leadership Training at Cal State Long Beach and a member of ReACH’s Diversity Advisory Council.

We need you to achieve our goals! We need advocates like you to spread the word about the importance of diverse research participation to your communities. Become a ReACH ambassador by e-mailing us at info@drsusanloveresearch.org for an application. You can start supporting ReACH today by sharing our educational program posts found on our website (https://www.drsusanloveresearch.org/) and social media pages (https://www.facebook.com/dslrf, https://twitter.com/drloveresearch, https://www.instagram.com/drsusanloveresearchfoundation/). To improve health and quality of life for all, we must continue to advance our knowledge and do research that accurately represents our diverse communities and needs.

“It may not be easy, but it is definitely worth the effort!” Dr. Nguyen-Rodriguez remarked.

1 Oh SS, Galanter J, Thakur N, Pino-Yanes M, Barcelo NE, White MJ, et al. (2015) Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled. PLoS Med 12(12): e1001918. doi:10.1371/journal.pmed.1001918

2 National Academies of Sciences, Engineering, and Medicine. 2016. Applying an Implementation Science Approach to Genomic Medicine: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/2340

3 Colby, Sandra L. and Jennifer M. Ortman, Projections of the Size and Composition of the U.S. Population: 2014 to 2060, Current Population Reports, P25-1143, U.S. Census Bureau, Washington, DC, 2014

4 npj Breast Cancer (2015) 1, 15013; doi:10.1038/npjbcancer.2015.13; published online 14 October 2015