Diversity in Health Research — Why it Matters
Diversity and inclusion are topics many of us are learning more about every day. From education and academics to the workplace and careers, we are exploring the important role diversity plays in different spaces, including healthcare and research. This article will highlight why diversity matters in health research and the impact it has on many people.
What is Diversity and Why is it Needed in Health Research?
Diversity is defined as “any dimension that can be used to differentiate groups and people from one another” (1). Simply put, diversity means having different types or forms of something. When considering participants in a research study, diversity looks like including people from different social and ethnic backgrounds and with a wide range of characteristics like age, race, ethnicity, and gender (2). It may also mean including people with different backgrounds and experiences, such as where a person lives, religious and cultural beliefs, gender identity, sexual preference, abilities, socioeconomic status, veteran status, family structures, and personalities (1,2).
These differences are important to have in research participants because they represent what our population looks like. Health research should “mimic” what the real world resembles and should also include people most impacted by the health condition or topic being studied (3). People may have different experiences with the same diseases or health conditions. Clinical research investigates those differences to address them (4). Clinical research also helps researchers answer questions about health conditions and treatments, however the results from those studies will be most relevant to the types of people who took part in that study. If certain people are not included as participants, then researchers don’t know if that treatment, medicine, or intervention will work for them (3). This concept is called “generalizability” (3). Research that is generalizable has study findings that are useful to a larger group of people (5).
What Diversity in Health Research Might Look Like
To illustrate this concept, let’s pretend there is a clinical trial studying a new blood pressure medication to see if it helps adults with high blood pressure. The study showed that this new medication regulated blood pressure levels for the participants in the study. However, the study only enrolled participants who were white, male, and over the age of 65. Unfortunately, these results may not be generalizable to other individuals (such as other genders, races, ethnicities, and ages) since the trial didn’t study the medication in other people. While this scenario is fictional, it highlights potential real challenges in clinical research when diverse populations are not included.
A real-world example of how including diverse participants in research can benefit the larger population is from a 2010 study looking to see if acetaminophen (commonly known as Tylenol®) helped treat migraine headaches. The study included participants of different ages (range: 18–72 years old; average age of 39 years) (8) and racial backgrounds (86.4% white and 10.2% black compared to the US population at that time of 72% white and 13% black) (8,9). The research team concluded that “Acetaminophen in the identified dose is an effective and well-tolerated treatment for episodic and moderate migraine headaches” (8). Those results are generalizable to the diverse populations included in the study. This helps more people have additional options to treat their migraine headaches (8).
Benefits of Diversity in Health Research
Including diverse populations in research has many potential positive benefits to society and future generations (6), including:
· Improved medical knowledge
· New discoveries in health treatments and medicines
· More resources for more communities (6)
· Built and restored trust between marginalized populations and healthcare systems (7)
Help Enhance Diversity in Health Research
You can play an important role in increasing diversity in health research! Start by speaking to your healthcare provider about potential research opportunities. Begin thinking about ways you can learn more about clinical trials and getting involved.
You can also consider joining ResearchMatch.org as a volunteer. ResearchMatch is an online registry that advocates for diversity in health research. The platform helps connect diverse groups of volunteers interested in research studies with researchers from top medical centers across the U.S. who are recruiting participants for their studies (10). If you want to find research studies that interest you, Trials Today is a great platform to start looking. It is a user-friendly online tool that searches through an online database of actively recruiting clinical studies that are registered on ClinicalTrials.gov (11,12).
Your participation helps make studies more representative of larger populations. Including diverse groups in health research and clinical trials is important and it can start with you!
References:
1. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHD). (2022). Centers for Disease Control and Prevention. NCCDPHP Health Equity Glossary | CDC
2. Servaes, S., Choudhury, P., & Parikh, A. K. (2022). What is diversity? Pediatric radiology, 52(9), 1708–1710. https://doi.org/10.1007/s00247-022-05356-0
3. Kukull, W. A., & Ganguli, M. (2012). Generalizability: the trees, the forest, and the low-hanging fruit. Neurology, 78(23), 1886–1891. https://doi.org/10.1212/WNL.0b013e318258f812
4. NIH Clinical Research Trials and You. The National Institutes of Health. https://www.nih.gov/health-information/nih-clinical-research-trials-you/basics
5. National Academies of Sciences, Engineering, and Medicine; Policy and Global Affairs; Committee on Women in Science, Engineering, and Medicine; Committee on Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research; Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington (DC): National Academies Press (US). (2022) Why Diverse Representation in Clinical Research Matters and the Current State of Representation within the Clinical Research Ecosystem. Available from: https://www.ncbi.nlm.nih.gov/books/NBK584396/
6. Daundasekara, S. S., Arlinghaus, K. R., & Johnston, C. A. (2020). Quality of Life: The Primary Goal of Lifestyle Intervention. American journal of lifestyle medicine, 14(3), 267–270. https://doi.org/10.1177/1559827620907309
7. Goold S. D. (2002). Trust, distrust, and trustworthiness. Journal of general internal medicine, 17(1), 79–81. https://doi.org/10.1046/j.1525-1497.2002.11132.x
8. Prior, M. J., Codispoti, J. R., & Fu, M. (2010). A randomized, placebo-controlled trial of acetaminophen for treatment of migraine headache. Headache, 50(5), 819–833. https://doi.org/10.1111/j.1526-4610.2010.01638.x
9. United States Census Bureau. 2010 Census Show’s America’s Diversity. Race and Hispanic Origin Data (2011). https://www.census.gov/newsroom/releases/archives/2010_census/cb11-cn125.html
10. ResearchMatch. Our Volunteers. (2024). https://www.researchmatch.org/volunteers/
11. Schorr, Matt. How to find a research study. ResearchMatch.org. (Oct. 23, 2023). https://medium.com/@matt.schorr/how-to-find-a-research-study-75e75264fbc6
12. Trials Today. Trials Today at ResearchMatch.org. (2024). https://trialstoday.org/
