Lessons Learned: Recruiting and Retaining a Diverse Population in Research

Human genome research is one of the most rapidly growing areas of clinical and public interest. As whole genome sequencing accelerates identification of molecular factors that have statistically significant causal relationships to human growth and development, clinical management will undoubtedly improve. Furthermore, the accuracy and coverage of genomic sequencing, as well as analysis capabilities, will continue to improve. These gains are revealing many novel causes of human disease, including rare Mendelian disorders as well as the molecular underpinnings and genetic susceptibilities involved in complex and multifactorial conditions.

Working in partnership with a hospital, physicians and their staff, and a community safety net clinic, we have recruited over 2300 family trios from 100 countries of birth for three whole genome research studies.  We have established a team of nurse and clinical researchers to be part of a translational research department conducting human genome research at a community hospital.  The nurses are uniquely qualified to recruit research subjects.  All have experience in working with mothers and/or infants.  Several had experience recruiting research subjects.  The communication skills required for nursing practice, especially the ability to validate understanding by the participants make nurses excellent research recruiters. 

Two of the studies have a longitudinal component.  When initiating the studies, we made concerted efforts to capitalize on the diversity of our community to enhance the value of the genomic research.   Specific efforts are made to recruit subjects of diverse race, ethnicity and socioeconomic status by utilizing a multicultural staff and multiple modes of recruitment. Recruitment techniques to enhance the diversity of the enrollees include placing native Spanish speakers in a site where this is the primary language, recruitment materials in Spanish, recruiting on social media, and use of a primary phone line and email address to provide consistent access for participants and potential enrollees.  Using these methods, we have been able to increase recruitment from 31 participants per month in two sites in Dec. 2012 to 75 per month in 4 sites by December 2014.

We recognize, however, that for longitudinal research, enrollment is an important but small piece of the research process.  Retention of participants, as measured by survey return is paramount. Initially, there was a significant discrepancy between the return rate of surveys in English and Spanish.   This has been addressed by designating a multicultural staff team devoted to survey compliance and developing culturally relevant surveys for participants.  This team initiates the online survey for participants requesting it be emailed, mails it to participants without email and follows up at consistent intervals when a survey has not been received.  The survey content incorporates child health status and development questions, demographic information and standardized survey tools exploring maternal confidence, depression, stress and family concerns.  The standardized tools have established reliability and validity in English and Spanish. The longitudinal surveys have maintained a survey response rate of over 75%. 

Successful recruitment and retention of research study participants is dependent on knowing and engaging the patient population being recruited.