Barriers to Enrollment in Rheumatology Research: Who, What, Where, When, and Why?

Area of Science:

• Rheumatology
• Clinical Research
• Health Disparities

Background:

• Rheumatic diseases disproportionately affect ethnic minorities, yet they are underrepresented in research.
• Lack of ethnic and socioeconomic diversity in rheumatology research hinders understanding and treatment.
• Addressing underrepresentation is critical for equitable healthcare outcomes.

Purpose of the Study:

• Identify barriers to patient enrollment in rheumatology clinical research.
• Propose solutions to overcome identified enrollment barriers.
• Enhance diversity in rheumatology research participation.

Main Methods:

• Surveyed 184 patients across two rheumatology clinics (Safety Net and university-based).
• Patients ranked their top five of eight concerns regarding clinical research participation.
• Data stratified by self-reported ethnicity and clinic site to identify ranking differences.

Main Results:

• Fear of research risks was the primary barrier across all ethnicities.
• Work responsibilities were a higher concern for non-Hispanic Whites (NHW) than Hispanics.
• Fear of discovering a serious illness was more prevalent at the Safety Net clinic and among Hispanics.

Conclusions:

• Top barriers include fears of research risks, work responsibilities, and discovering serious illness.
• Significant differences in barrier rankings exist between ethnic groups and clinic sites.
• Improving health literacy and addressing cultural factors are essential for inclusive rheumatology research.