Abstract A39: Enhancing diversity in clinical trials: Solutions from community members
Authors: Ford Marvella E. , Siminoff Laura A. , Pickelsimer Elisabeth , Mainous Arch G. , Smith Dam W. , Diaz Vanessa , Soderstrom Lea H. , Tilley Barbara C. 
Published: December 2010

Introduction: African Americans (AAs) and Hispanics/Latino Americans (HLAs) are underrepresented in clinical trials research. The purpose of this study was to conduct focus groups with AAs and HLAs to elicit their solutions to trial participation barriers.

Methods: Thirty-two AAs and 25 HLAs participated in six racially and ethnically homogenous focus groups conducted in South Carolina (n=3 focus groups per racial/ethnic group). Focus group questions were based on a modified conceptual framework from the Institute of Medicine's report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. The coding process using the NVIVO software program provided a systematic approach to identifying themes in the data. Statements identified from the data were coded using a structured coding technique and grouped into conceptual categories, themes, or axial codes by consensus among the investigators. Themes related to questions that were common across both racial/ethnic groups were identified, as well as themes unique to a particular group.

Results: Participant-derived solutions to barriers to clinical trial participation from both racial and ethnic groups. As a solution to: (a) lack of willingness to take part in clinical trials, participants suggested that if other physical and emotional risks could be reduced, altruism could serve as a prime motivator for clinical trials; (b) fears related to the responsibility of the research system for adverse effects, participants wanted personal guarantees about their safety. They understood researcher responsibility to include: guarantees that free healthcare would be provided to those who experienced adverse effects and reassurance that a drug would not cause harm or exacerbate other conditions; (c) the cost of trial participation, participants believed that these costs could be alleviated through fair compensation and by holding trial appointments at night or on weekends, and (d) recruitment challenges in diverse populations, members of both racial and ethnic focus groups advocated recruitment in community contexts, such as churches, ethnic gathering places, and support groups. AA participants made the following suggestions. As solutions to: (a) concern over past abuses of the health care system, participants suggested that medical universities advertise their improved clinical climate and apologize for past discriminatory conduct; and (b) lack of diversity in research teams, participants suggested coaching clinicians in better patient communication and developing diverse research teams. HLA participants made the following suggestions. As a solution to: lack of availability of study materials in Spanish, participants stressed the importance of having Spanish-speaking clinicians and patient advocates as well as Spanish-language study materials.

Conclusions: Responses from AA and HLA participants reflect their unique cultural backgrounds and historical experiences in the United States. Recruitment interventions need to be tailored to the characteristics of the groups that are being recruited to ensure that their concerns/needs are met during the recruitment process.

Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A39.