Barriers to Medical Research Participation as Perceived by Clinical Trial Investigators: Communicating with Rural and African American Communities

Abstract

Clinical trials help advance public health and medical research on prevention, diagnosis, screening, treatment, and quality of life. Despite the need for access to quality care in medically underserved areas, clinical trial participation remains low among individuals in rural and African American communities. This study assessed clinical trial research in South Carolina's five main academic medical centers, focusing specifically on clinical trial investigators' perceived barriers to recruitment in the general population and in rural and African American communities. Online survey responses (N = 119) revealed that it was most difficult for investigators to recruit from rural areas and that rural residents were least likely to be represented in medical research, behind both the general public and African Americans. Barriers focusing on communication or awareness proved to be the biggest hurdles to finding potential participants in both the general public and rural communities. Psychological barriers to recruitment were perceived to be most prevalent in African American communities. Study findings provide important insights from the perspective of the clinical trial investigator that will aid in the development of effective communication and education strategies for reaching rural and African American residents with information about clinical trials.

Acknowledgments

The authors are grateful to Dr. Jay Moskowitz (Health Sciences South Carolina) and Dr. Tom Guidice (South Carolina OB/GYN Associates) for their support and assistance.

Notes

¹Although 83% of respondents self-identified as principal investigators, others self-identified as managers, project managers, recruiters, research associates, nurses, or “other.” Because of these individuals' close work with CT recruiting, all of these respondents, regardless of their role, were included in our analyses.

²According to the U.S. Census Bureau, African Americans comprise 28.2% of the South Carolina population and 12.9% of the national population. Furthermore, 25 of South Carolina's 46 counties are designated as nonmetropolitan (i.e., rural), with 39.5% of the state's population living in rural areas, compared with 21% of the national population living in rural areas.

³These contacts were available to the public at (http://scresearch.org/studies/browse/by_researcher; http://academicdepartments.musc.edu/faculty/directory) and were added to the sampling frame database.

⁴Percentages add up to more than 100% because respondents could identify with more than one role.

Note. Respondents could identify with more than one type of clinical trial.

^a Participants responded on a 5-point scale ranging from 1 (strongly disagree) to 5 (strongly agree).

^b Participants responded on a 5-point scale ranging from 1 (not at all represented) to 5 (very well represented).

Note. Means with different superscripts differ significantly at p < .05; means with the same superscript are not significantly different. Paired-samples t tests were used. Items were reported on a 5-point scale ranging from 1 (strongly disagree) to 5 (strongly agree).

⁵Negative perceptions: general public by rural, t(85) = −2.397, p < .002, general public by African Americans, t(81) = −5.121, p < .001, rural by African Americans, t(80) = −3.730, p < .001. Lack of confidence: general public by rural, t(85) = −3.847, p < .001, general public by African Americans, t(81) = −7.324, p < .001, rural by African Americans, t(80) = −4.830, p < .001. Fear of participation: general public by rural, t(85) = −3.152, p < .002, general public by African Americans, t(81) = −6.306, p < .001, rural by African Americans, t(80) = −4.069, p < .001.

⁶The authors acknowledge that African American residents live in rural areas of the state, which could make it even more difficult to accrue these individuals for CTs.