How Can We Make Science More Inclusive?
Community-based participatory research can bring in new stakeholders.
Posted December 1, 2022 | Reviewed by Jessica Schrader
- Many barriers prevent minority communities from engaging in research, including the researchers' own biases.
- Community-based participatory research (CBPR) offers a potential solution for making research more representative.
- CBPR can improve research by providing insight into the questions being studied and the conclusions being drawn.
Co-authored by Elayne Zhou, Emily Saldich, and Darby Saxbe.
The researchers were stumped: why were asthma rates so high in women over age 45? Typically, children are the most vulnerable to asthma, but women in a low-income Brooklyn neighborhood had similar asthma rates to children. Ultimately, community members provided an explanation that hadn't occurred to the research team. Focus group conversations revealed that many women in the neighborhood worked in laundries, hair and nail salons, and dry cleaners, all of which expose employees to chemicals that could lead to higher rates of respiratory disease. Without this insight, the researchers, who were outsiders to the community, would have been ill-equipped to find a solution to the problem. This study highlighted two realities: 1) socioeconomic and environmental factors can lead to health disparities for some communities, and 2) the communities themselves offer valuable knowledge that can inform research on these disparities. It also shows us how increasing the diversity of voices represented in health care research can elevate the health and safety of our entire society.
Diverse groups are still poorly represented in science, however. As of 2014, about 86% of participants in clinical trials assessed globally were white. Further, ethnicity and race are often underreported or not reported at all, making it difficult to know how informative research findings are about broader groups. In other words, although we are a rapidly diversifying nation, many Americans are not benefiting from scientific advances, and this perpetuates inequities in people’s health and health care.
One of the reasons that diverse groups such as racial-ethnic minoritized communities are underrepresented in research is due to the multitude of barriers to clinical research participation. Lack of trust in researchers, transportation difficulties or costs, competing demands on time, lack of health insurance, and concerns over legal status are only a few of these barriers.
Another reason is due to researchers themselves getting bogged down by the seemingly endless barriers to representative science. In fact, a recent study found that 87.1% of researchers interviewed strongly believed in the value of diversity in research broadly but only a meager 38.3% believed it to be important in their own research. Interviews with participating researchers revealed that these biases were due to the view that diversity in research is beyond the reach of individual scientists.
So what can be done? A growing number of researchers are using an approach called community-based participatory research (CBPR). CBPR centers community voices in research to empower participating communities and to build trust with populations who have complicated and painful histories with research.
CBPR is not a specific checklist or step-by-step protocol to follow, but rather an approach to research adapted to each study. Just as every community is dynamic and unique, so is CBPR. Importantly, CBPR focuses on who has power in research, and emphasizes collaborative partnership between researchers and community members. The community is involved in all aspects of the CBPR process, which ensures that the communities studied will ultimately benefit from the work being done. A necessary ingredient in conducting CBPR is that researchers maintain a sense of humility in their work with community members—that is, they must understand that community members and participants are the true experts on their own lived experiences.
There is no one way to conduct CBPR, but some fantastic work from researchers at La Salle University and the University of Pennsylvania can give you a flavor of what it looks like in practice. The goal of the study was to develop a program or intervention to reduce the risk of reactive or revenge-based retaliatory violence for young Black men. The intervention itself was co-developed by barbers and barbershop owners and delivered to Black men through their barbers in safe barbershop settings. To do this, they followed a few key steps:
- They developed a community advisory board of barbershop owners and barbers that met regularly with scientists throughout the project.
- They conducted focus groups with barbers and barbershop owners to explore how to best deliver their program. They also surveyed young Black men to gather information on their experiences with retaliatory violence to inform the program’s content.
The above are only some of the ways that researchers have taken a CBPR approach in their studies. These community-based approaches are important in asking and answering the right questions and extending the impact and reach of scientific findings.
How do we know community-based approaches are effective?
Community input has been shown to strengthen many aspects of the research process, including the relevance, quality, dissemination, and outcomes of research.
Finding the right research question
Researchers are often outsiders in the communities they study, and commonly use existing research to decide what to study next. As a result, researchers might miss the questions that actually matter to the communities they work with, especially if those communities have historically been underrepresented in science. Community members, on the other hand, are knowledgeable about their own contexts and how their needs can best be met. In the case of the Brooklyn neighborhood with high asthma rates discussed earlier, community input was critical to understanding the problem and how to address it. Without insider knowledge, researchers would not have known about residents’ workplace exposure to toxic chemicals, and may have wasted time and resources on useless or even harmful solutions.
Improving the quality of research
Input from community members can also improve research quality. Community involvement, for example, has been shown to improve study recruitment. Many communities are distrustful of outsiders or face significant language barriers, which can exacerbate poor representation of certain groups. To address these hurdles, one research group doing a study on osteoporosis partnered with community health workers to successfully recruit participants from a Chinese immigrant community. At the time of the research, osteoporosis had not yet been adequately studied in people of Asian heritage. In this case, the researchers teamed up with home health care workers who spoke the same dialects as study participants and had a shared understanding of participants’ cultural norms, beliefs, and values. These common identity factors, along with continued efforts to build trust throughout the project, helped community members feel more comfortable participating and led to high enrollment in the study. The home health care workers also helped adapt the study questionnaires to be more relevant and easier to understand for this particular group. As a result of these community-based efforts, researchers were able to better understand the experience of osteoporosis in a previously hard-to-reach population. They ultimately found this sample of Chinese immigrants to in fact be at high risk for osteoporosis. In addition to improving recruitment and other study methods, community involvement can also strengthen the interpretations of research findings, allow researchers to share findings with broader audiences, create community-research partnerships that are sustainable over the long term, and improve research outcomes.
In sum, CBPR is an important approach to research that is becoming more popular and has the potential to reshape how science works and who it works for. We hope that this post has piqued your interest in how community-based science can improve health for everyone. Below are some additional resources on CBPR, diversity in science, how to access scientific articles for free, and how to participate in research.
Additional resources for accessible and equitable science
- Participate in Research. A website for finding studies that are recruiting participants in case you want to join one yourself.
- Why Diversity in Research Participation Matters. More information on why participation in clinical trials and research matters. This piece is geared towards Latino/a/x communities but has some great takeaways that help demystify clinical trials and research.
- Community Based Participatory Research Toolkit. A powerful tool containing all the nuts and bolts of CBPR.
- Open Access Research. Platforms where you can read free and accessible research studies. This resource also contains information on how to read scientific articles with caution, or how to avoid illegitimate sources.
- Collection of Diverse Voices in Science. Various pieces that uplift diversity and highlight a variety of perspectives in research.
Cargo, M., & Mercer, S. L. (2008). The value and challenges of participatory research: strengthening its practice. Annu. Rev. Public Health, 29, 325-350. https://doi.org/10.1146/annurev.publhealth.29.091307.083824
Clifasefi, S. L., Collins, S. E., & LEAP Advisory Board. (2020). The life‐enhancing alcohol‐management program: Results from a 6‐month nonrandomized controlled pilot study assessing a community based participatory research program in housing first. Journal of Community Psychology, 48(3), 763-776. https://doi.org/10.1002/jcop.22291
Corburn, J. (2002). Combining community-based research and local knowledge to confront asthma and subsistence-fishing hazards in Greenpoint/Williamsburg, Brooklyn, New York. Environmental Health Perspectives, 110(suppl 2), 241-248.
Knepper, T. C., & McLeod, H. L. (2018). When will clinical trials finally reflect diversity?. Nature, 557(7704), 157–159. https://doi.org/10.1038/d41586-018-05049-5
Polo, A. J., Makol, B. A., Castro, A. S., Colón-Quintana, N., Wagstaff, A. E., & Guo, S. (2019). Diversity in randomized clinical trials of depression: A 36-year review. Clinical psychology review, 67, 22–35. https://doi.org/10.1016/j.cpr.2018.09.004
Oh, S. S., Galanter, J., Thakur, N., Pino-Yanes, M., Barcelo, N. E., White, M. J., de Bruin, D. M., Greenblatt, R. M., Bibbins-Domingo, K., Wu, A. H., Borrell, L. N., Gunter, C., Powe, N. R., & Burchard, E. G. (2015). Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled. PLoS medicine, 12(12), e1001918. https://doi.org/10.1371/journal.pmed.1001918
George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American journal of public health, 104(2), e16–e31. https://doi.org/10.2105/AJPH.2013.301706
Lauderdale, D. S., Kuohung, V., Chang, S. L., & Chin, M. H. (2003). Identifying older Chinese immigrants at high risk for osteoporosis. Journal of general internal medicine, 18(7), 508-515. https://doi.org/10.1046/j.1525-1497.2003.20331.x
Minkler, M., Vásquez, V. B., Warner, J. R., Steussey, H., & Facente, S. (2006). Sowing the seeds for sustainable change: a community-based participatory research partnership for health promotion in Indiana, USA and its aftermath. Health Promotion International, 21(4), 293-300. https://doi.org/10.1093/heapro/dal025
Mohatt, G. V., Hazel, K. L., Allen, J., Stachelrodt, M., Hensel, C., & Fath, R. (2004). Unheard Alaska: Culturally anchored participatory action research on sobriety with Alaska Natives. American Journal of Community Psychology, 33(3-4), 263-273. https://doi.org/10.1023/B:AJCP.0000027011.12346.70
Paradis, G., Lévesque, L., Macaulay, A. C., Cargo, M., McComber, A., Kirby, R., ... & Potvin, L. (2005). Impact of a diabetes prevention program on body size, physical activity, and diet among Kanien'keha: ka (Mohawk) children 6 to 11 years old: 8-year results from the Kahnawake Schools Diabetes Prevention Project. Pediatrics, 115(2), 333-339. https://doi.org/10.1542/peds.2004-0745
Passmore, S. R., Kisicki, A., Gilmore-Bykovskyi, A., Green-Harris, G., & Edwards, D. F. (2021). "There's not much we can do…" researcher-level barriers to the inclusion of underrepresented participants in translational research. Journal of clinical and translational science, 6(1), e4. https://doi.org/10.1017/cts.2021.876
Baker, J. L., Stevenson, H. C., Talley, L. M., Jemmott, L. S., & Jemmott, J. B. (2018). Development of a barbershop based violence intervention for young black emerging adult men. Journal of Community Psychology, 46(6), 762–774. https://doi.org/10.1002/jcop.21971