Study: Health-Related Research Lacks Diversity

Racial and ethnic minorities, especially African-Americans, are significantly less likely to participate in health-related research than whites, according to a new study.

The study, conducted by Ball State University and published in the Journal of Immigrant and Minority Health, examines health research participation history and willingness to participate.

Khubchandani

“First, most people who are socioeconomically disadvantaged have never participated in any health research study,” says study author Jagdish Khubchandani, a community health education professor in Ball State’s College of Health. “Second, past participation in health research and future intention to participate is lower in racial and ethnic minorities.”

This impedes the testing, development, implementation, and evaluation of various clinical and community-based disease prevention and health promotion interventions, according to Khubchandani.

“We investigated the issue because most studies on health research participation do not compare minorities and whites, are limited by small samples, and are often based on qualitative data such as interviews and focus groups,” he says.

Community members aged 18 years or older enrolled in HealthStreet, an innovative community engagement research program made up the source of the study population. A total of 7,809 community members (58.6% females) participated in the study with 65.8% African-Americans and 34.2% whites. African-Americans were statistically significantly less likely to have previously participated in a research study, be willing to volunteer for any type of health research study, or to trust research or researchers compared to whites.

Among the findings:

• Lesser-educated, older, and male African-Americans are less likely to participate in health research studies.
• About 15% of African-American respondents have participated in a health research study and 48% would participate in a health research study if invited. 
• While more than one-fifth of whites (23%) have participated in a study, majority would like to participate if invited (57%).
• The amount of fair compensation desired by African-Americans to participate in health research studies was two times higher than whites.

In regression analysis, education, age, gender, visits to healthcare practitioners, and facilities were statistically significant predictors for African-Americans participation in health research. “Keeping in view the findings of our study, clinical and public health researchers and practitioners should use special recruitment and retention strategies to increase the participation of African-Americans in health research studies,” Khubchandani says.

“We wanted to paint a clear picture with data and numbers on who participates, who does not, and what could be the reasons,” he says. “If most disease prevention, health promotion, and therapeutic interventions are tested on rich or non-minorities of any type, it’s not a good trend. Because, after drugs and initiatives reach the market, everyone is a consumer, but not every population has been used for testing of drugs and interventions.”

Next steps

Managed care professionals and leaders have a major role to play to ensure that their organizations and employees focus on vulnerable populations in prevention, treatment, and research, says Khubchandani.

“A lot of money and time is spent on vulnerable, poor, marginalized, and minority populations. Frequently, this is because we treat them in advanced stages and when there is little room for treatment and prevention, and also for engagement and consensus on larger issues that plague our healthcare system,” he says.

Periodic training of professionals in health research facilities, ensuring strategic recruitment and retention of minorities and marginalized in research, tailoring healthcare to racial and cultural factors, and building trust in consumers, should be a priority, according to Khubchandani.

“Researchers should aggressively target minorities, disadvantaged, and those who have health problems,” says Khubchandani. “Focusing our research and intervention trials on convenient, healthy populations will not help reduce health disparities suffered by poor, minorities, and the marginalized. This would need strategic and culturally competent recruitment and retention of vulnerable and minority populations in all healthcare initiatives and healthcare research. We have to build trust, ensure justice, and maximize beneficence, for the marginalized populations and bring them to the mainstream of healthcare research and related enterprises.”