Racial and ethnic minorities, especially African-Americans, are significantly less likely to participate in health-related research than Whites, according to a new study from Ball State University.
The lack of participation impedes the testing, development, implementation and evaluation of various clinical and community-based disease-prevention and health-promotion interventions, said Dr. Jagdish Khubchandani, a community health education professor in Ball State’s College of Health and author of the study “Black–White Differences in Willingness to Participate and Perceptions about Health Research.”
Dr. Jagdish Khubchandani
Recently published in the Journal of Immigrant and Minority Health, the study examined health research-participation history and willingness to participate.
“According to the findings, lesser-educated, older and male African-Americans are less likely to participate in health research studies,” Khubchandani said, adding that some of the reasons for not participating are valid.
“It could be possible that this generation of older African-American males still experiences prejudice or is highly aware of the past exploitation of racial and ethnic minorities in healthcare research and healthcare systems,” he said.
Researchers also found that about 15 percent of African-American respondents have participated in a health research study and 48 percent would participate in a health research study if invited. More than a fifth of White respondents (23 percent) have participated in a study, and the majority would like to participate if invited (57 percent).
Khubchandani said government regulations require that any research that includes human populations must include women, minorities and the underserved, unless otherwise noted. It’s an ethical issue.
For example, if a new drug hasn’t been tested on minorities, there’s a risk of different results and effects of the drug on minorities when the drug hits the market.
“A lot of the research we see involves middle-class White males because they are easy to find. Recruiting minorities requires more searching and trust-building,” he said.
“Trust-building should be a key component of healthcare professional training and practice. If individuals do not want to participate in health research studies, it becomes difficult to find better care or disease-prevention methods.”
Members of a community in Northeast Florida, age 18 or older, comprised the study population. A total of 7,809 community members participated: 58.6 percent were women, 65.8 percent were African-Americans and 34.2 percent were White.
Participants were enrolled in HealthStreet, an innovative community-engagement research program. The program also connects participants to local health services based on their health issues.
“Healthcare practitioners need to ensure beneficence, justice and respect for all,” said Khubchandani. “While billions of dollars are spent every year due to existing health disparities, these disparities can be reduced by better research and including racial and ethnic minorities as a key component of all healthcare initiatives from governance to consumer preference.”
Khubchandani, a member of Ball State’s faculty since 2010, has doctoral degrees in clinical medicine and health education. His research interests are in the field of clinical and social epidemiology, and community and global health. He has served as a faculty fellow for the BSU Global Health Institute and Center for International Development.
His study also found that:
•Older African-American men with lower education are the least likely to participate in health research studies.
•The amount of compensation desired and considered fair by African-Americans to participate in health research studies was two times higher than White people.
•Individuals who are unemployed, food-insecure and chronically ill are more likely to volunteer for health research studies.
•Those who have participated in health research studies in the past are more likely to be willing to participate again, if invited.
•Statistically, African-Americans were significantly less likely than Whites to have previously participated in a research study, to be willing to volunteer for any type of health research study or to trust research or researchers.
•In logistic regression analysis, education, age, gender and visits to healthcare practitioners and facilities were statistically significant predictors for African-American participation in health research.
•Clinical and public health researchers and practitioners should use special recruitment and retention strategies to increase Black participation in health research studies.
Although the study was done in Florida, Khubchandani said he believes the outcome is about the same nationwide.
“I don’t think the results will differ based on location. Some of the findings have been proven time and again across various populations in the United States,” he said. “Minorities are less likely to be included in health research.”