Successful Strategies for Practice-Based Recruitment of Racial and Ethnic Minority Pregnant Women in a Randomized Controlled Trial: the IDEAS for a Healthy Baby Study

Abstract

Background Racial/ethnic minority patients are often underrepresented in clinical trials. Efforts to address barriers to participation may improve representation, thus enhancing our understanding of how research findings apply to more diverse populations. Methods The IDEAS (Information, Description, Education, Assistance, and Support) for a Healthy Baby study was a randomized controlled trial (RCT) of an intervention to reduce barriers to using publicly reported quality data for low-income, racial/ethnic minority women. We used strategies grounded in a health equity framework to address barriers to recruitment and retention in three domains: preparation, process, and patient-centeredness. “Preparation” included teaching study staff about health inequities, role-playing skills to develop rapport and trust, and partnering with clinic staff. “Processes” included use of electronic registration systems to pre-screen potential candidates and determine when eligible participants were in clinic and an electronic database to track patients through the study. Use of a flexible protocol, stipends, and consideration of literacy levels promoted “patient-centeredness.” Results We anticipated needing to recruit 800 women over 18 months to achieve a completion goal of 650. Using the recruitment and retention strategies outlined above, we recruited 746 women in 15 months, achieving higher recruitment (87.1 %) and retention rates (97.3 %) than we had anticipated. Discussion These successful recruitment and retention strategies used for a large RCT promoted inclusivity and accessibility. Researchers seeking to recruit racial and ethnic minority pregnant women in similar settings may find the preparation, process, and patient-centered strategies used in this study applicable for their own studies. Trial Registration ClinicalTrials.gov NCT01784575, 1R21HS021864-01

Facilitators and barriers of participation in a longitudinal research on migrant families in Badalona (Spain): A qualitative approach

“…Most participants were willing to participate and reported a wide range of benefits—as reported in other studies—for themselves, their families (Evans et al., ; Woodward‐Kron et al., ), the whole society (Ford et al., ; Gadegbeku et al., ), the health system and science (Ford et al., ). Previous studies showed that perceiving the direct benefit of research participation enhances recruitment (Ejiogu et al., ), while the lack of benefit reduces the motivation to participate (Goff et al., ). In our study, conducting biological samples testing and provision of information about the health status of children were the greatest perceived benefits among the participants.…”

“…In migrant populations, a range of language, cultural and socioeconomic factors such as fear and distrust in research and government institutions; lack of interest, personal benefit or knowledge about research; intrusive nature of survey questions; issues of confidentiality and racial profiling; economic and time constraints; and transportation and mobility issues; make identification, participation and re‐contacting more difficult than for native‐born populations. These factors collaborate to maintain migrant populations under‐represented and excluded in health research (Ejiogu et al., ; Evans et al., ; Ford et al., ; Goff et al., ; Jones & Jablonski, ; Katigbak et al., ; Woodward‐Kron et al., ).…”

“…Despite the challenges, studies on hidden populations—such as ethnic minorities—have proved that minorities may be as willing to enrol in health research as majority white population (Brown & Topcu, ), and have highlighted the importance of facilitating access, offering opportunities for participation and using patient‐centred strategies (Brown & Topcu, ; Goff et al., ). As reported by UyBico, Pavel, & Gross (), native‐born African Americans are a widely studied ethnic minority group.…”

Willingness to participate in weight-related research as reported by patients in PCORnet clinical data research networks

“…Importantly, our analyses controlled for a person’s general willingness to participate in health research, which suggests that these factors are independently associated with their willingness to participate in weight-related research, overcoming some concerns about potential social desirability bias. Recognizing that differential participation in research may not result from a person’s lack of willingness to participate in research, but rather may be attributable to other potential causes like time, access, or financial resources, will shape how researchers approach recruitment of populations that have been traditionally under-represented in medical research [ 17 – 20 ]. These findings are especially salient for ongoing efforts by the U.S. Food and Drug Administration and the National Institutes of Health to enhance recruitment efforts for traditionally under-represented minorities [ 21 ].…”

Improving community participation in clinical and translational research: CTSA Sentinel Network proof of concept study

“…Participation in research by members of racial or ethnic minority groups and women, older adults, and rural populations continues to be monitored by researchers through ongoing efforts [1][2][3]. Underrepresentation of these populations in research has occurred, potentially generating findings which cannot be generalized [4][5][6]. Community-engaged research that relies on a community health worker (CHW) model has been shown to be effective in building trust in the community, thereby motivating people to participate in health research [7][8][9][10][11].…”