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Racial, ethnic minorities less likely than whites to participate in health research studies
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Racial and ethnic minorities — particularly black individuals — appeared less likely than white individuals to participate in health-related research studies, according to study results.
Jagdish Khubchandani, PhD, MPH, associate professor of community health in the department of nutrition and health science in Ball State University’s College of Health, and colleagues assessed health research participation history and willingness to participate among 7,809 members of HealthStreet, a community engagement research program. The study population was 65.8% black and 34.2% white.
Results showed 23% of white individuals and 15% of black individuals reported participating in a health research study. Additionally, 57% of white respondents said they would be willing to participate in such a study, compared with 48% of black respondents.
Older black men with less education appeared the least likely to participate in studies. Black respondents desired twice as much as financial compensation as white respondents for study participation.
Individuals who were unemployed, food insecure or chronically ill were more likely to be willing to participate, as were those who had previously participated in a trial.
HemOnc Today spoke with Khubchandani about the study findings and their potential implications, a possible shift in attitudes among younger black individuals, and how members of the clinical community can reduce disparities in health research study participation.
Question: Why did you decide to investigate this particular component of racial disparity?
Answer: There is evidence to show that racial and ethnic minority populations are less likely to participate in health and biomedical research studies. However, existing studies have profound limitations. They frequently focus on minority populations only, the assessments are not quantitative in nature, the sample sizes are small, and the measures to assess participation in research are inadequate or few. We had a large sample size, could compare blacks versus whites, and assessed willingness to participate in various types of research studies.
Q: Was “willingness to participate” assessed through a yes/no question, or did you offer hypothetical situations?
A: We asked if they would be willing to participate in a health research study in the next year. The options were definitely, maybe, or not at all.
Q: Older black men are the least likely group to participate in research studies . I s there a trend toward increasing participation among younger populations?
A: We cannot say this for sure, but it is very clear that challenges remain when recruiting older black men in research studies. Also, a majority of the participants were younger and agreed to participate if given a chance to participate with fair compensation. So, we may see a shift in attitudes provided health care researchers and scientists continue to strategically recruit racial and ethnic minorities. This would need culturally competent and tailored strategies, as well as appropriate incentives and services for those who want to participate.
Q: Do you see evidence of this attitude shift yet?
A: Yes, there is some optimism. A majority of white and black respondents indicated they were willing to participate in health research studies, even though black individuals were significantly less likely to be willing. Also, the exception was older, lesser educated black men. We can infer that younger and more educated black individuals will be willing to participate if given a chance.
Q: Do you have any indication why black respondents desired more compensation than white respondents?
A: I assume this could be related to material deprivation and lower income. Also, it could depend on larger family size and lesser resources available per person in the household. There doesn’t seem to be any other plausible reason so far.
Q: Even if there is a trend toward increasing participation among younger black men, what are some potential explanations for why the disparity still exists?
A: It’s a complex interplay of various factors that are often correlated. Education, awareness and knowledge, health literacy, past research participation, and trust in the health care system and researchers are some key factors. These levels all see to be lower among black men than white individuals. For this very reason, researchers have to be mindful of and deliberate in how they plan their recruitment and retention efforts to engage more black men in health research studies.
Q: How do unemployment, food insecurity and chronic illness contribute to increased participation?
A: As mentioned above, there are several factors related to health research participation. Unemployment and food insecurity are directly related to education and poverty. In such situations, it could be easy to recruit someone because they are needy. However, this raises ethical concerns. Did someone participate just because they want food and money? If so, was their consent truly informed and voluntary or was it given out of desperation? We discuss in our study that government and scientific organizations should provide guidelines on incentives and research participation for extremely poor individuals. Chronically ill individuals also may participate out of desperation or need. Individuals who are chronically ill may consider research participation to seek subsidized care or some cure if they have failed to get help or successful treatment with other options of health care access.
Q: These sound like overwhelming problems with overwhelming solutions. Could you discuss one or two strategies that can be employed to start trying to reduce these disparities?
A: I agree, there is a lot that needs to be done. I propose many strategies, as holistic approaches are better for successful recruitment and retention of minority populations in research studies. Failure at one avenue can fail an entire study or initiative. Still, there are a few places to start. When research studies are being planned, initiatives for recruitment and retention of minorities should be discussed — and discussed upfront — to develops strategic initiatives. The earlier you plan, the better it is. All individuals involved in research should be trained and educated about the value of and requirements for including racial and ethnic minorities in research as specified by NIH guidelines. Including racial and ethnic minorities from your target audience in the research team is a valuable strategy. Create a list of recruitment sites, tools and techniques for outreach to minority populations. Plan to provide appropriate services and incentives to potential participants from racial and ethnic minorities. Design all study materials and protocols that can be easily understood by racial and ethnic minority populations. Good communication is a key for building trust, retaining people, explaining benefits and risks, and maximizing enrollment. Actually, most solutions are simple. It is all about how researchers conduct themselves and their research studies. A majority of the solutions are not expensive, but they need careful planning and strategizing.
Q: Your study focused on health research studies in general. Do you have any thoughts about how the findings apply to studies of individuals with cancer?
A: Cancer research is complicated in general, and also in context of our research findings. Participation in cancer trials is very low among eligible people. More specifically, it is very challenging to recruit racial and ethnic minorities in cancer-related trials. Several factors listed above can contribute — for example, age and sex — but there could also be an element of fear and uncertainty. Lack of knowledge about cancer origins and prognosis, physical and mental inability to stay in trials, and type of cancer also can influence participation. There is a dearth of studies about cancer patients’ perspectives and behaviors related to health research participation. Due to the lack of such studies, there are not enough evidence-based strategies to specifically help recruit and retain patients with cancer in research studies. We may have to depend on general recruitment and retention strategies broadly applicable to all populations. – by Rob Volansky
Reference:
Webb FJ, et al. J Immigr Minor Health. 2018;doi:10.1007/s10903-018-0729-2.
For more information:
Jagdish Khubchandani, PhD, MPH, can be reached at CL-325, 2000 W. Riverside Avenue,
Ball State University, Muncie, IN 47306; email: jkhubchandan@bsu.edu.
Disclosure: Khubchandani reports funding from Merck Neuroscience Research Laboratories.