Recruitment and retention strategies in clinical studies with low-income and minority populations: Progress from 2004–2014

Nicholson, Lisa; Schwirian, Patricia M.; Groner, Judith A.

doi:10.1016/j.cct.2015.07.008

Cited by 128 publications

(125 citation statements)

References 55 publications

Supporting

Mentioning

121

Contrasting

Order By: Relevance

“…Studies run the risk of not collecting sufficient data from controls to perform case-control analysis with participants without disease seen to be dropping out significantly early. Similarly, more efforts [46][47][48] are needed to retain the younger population that, although demonstrating large enrollment also features a majority dropping out on day one.…”

Section: Discussionmentioning

confidence: 99%

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

et al. 2020

View full text Add to dashboard Cite

Digital technologies such as smartphones are transforming the way scientists conduct biomedical research using real-world data. Several remotely-conducted studies have recruited thousands of participants over a span of a few months. Unfortunately, these studies are hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of findings from these studies. We report the challenges in retention and recruitment in eight remote digital health studies comprising over 100,000 participants who participated for more than 850,000 days, completing close to 3.5 million remote health evaluations. Survival modeling surfaced several factors significantly associated(P < 1e-16) with increase in median retention time i) Clinician referral(increase of 40 days), ii) Effect of compensation (22 days), iii) Clinical conditions of interest to the study (7 days) and iv)Older adults(4 days). Additionally, four distinct patterns of daily app usage behavior that were also associated(P < 1e-10) with participant demographics were identified. Most studies were not able to recruit a representative sample, either demographically or regionally. Combined together these findings can help inform recruitment and retention strategies to enable equitable participation of populations in future digital health research.

show abstract

Section: Discussionmentioning

confidence: 99%

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

et al. 2020

View full text Add to dashboard Cite

show abstract

“…Attrition in their trial was lower than that in two similar RCTs, at 10.9% vs. 37% and 40%. Although many of these measures had been found to be effective in prior studies (14,19,20), two of the components had not been previously reported. One unique component was an electronic tracking database that was multifunctional in addressing monitoring of outcomes, adherence to outcome phone calls, and participants at risk for loss to follow-up or currently lost to follow-up.…”

mentioning

confidence: 98%

“…This novel approach resulted in identification of root causes for nonresponse, creation, and implementation of an action plan, evaluation of response outcomes at team meetings, and continuous modification of the action plan. In addition to these strategies, collaboration with a community organization has also been shown to be effective in engaging low-socioeconomic status, racial/ethnic minority participants in research (20). Although resource-and time-intensive, these evidence-based strategies provide a systematic template to researchers.…”

mentioning

confidence: 99%

Policy solutions to recruiting and retaining minority children in research

Raphael

Lion²,

Bearer

2017

Pediatr Res

View full text Add to dashboard Cite

D espite substantial investments across research, policy, and legislation, inequities in child health persist and represent a formidable challenge to improving health outcomes for children. Disparities have been demonstrated in numerous health-care settings and across a vast number of chronic conditions (1-4). Root causes of disparities are complex and frequently intertwine multilevel factors such as race/ethnicity, socioeconomic status, discrimination, psychosocial stress, education, economic opportunity, and neighborhood environment (5,6). Although studies documenting disparities in child health have been plentiful, evidencebased interventions and policy solutions to address inequities are still in their infancy. In this issue, Gkourogianni et al. (7) report on disparities in disease severity and outcomes among Hispanic and African-American children with Pediatric Cushing Disease (CD). The authors document disproportionately higher severity of CD in Hispanic and African-American children relative to white children both preoperatively and postoperatively. Both racial/ethnic minority groups also had higher proportions of diagnosis at an advanced stage. The authors postulate a number of mechanisms by which these disparities in CD severity scores occurred. They appropriately highlight variables at the level of the patient (e.g., genetics, social determinants of health), provider (e.g., fund of knowledge, quality of care), and health-care system (e.g., delays in referral, access to subspecialty care). Also important, the authors identify challenges in the conduct of research with respect to minorities being under-represented in pediatric oncology research protocols and clinical trials for rare diseases. Randomized controlled trials (RCTs) are considered the gold standard in determining the effectiveness of health-care interventions (8). However, the reliability of results can be compromised with differential enrollment or retention among subsets of participants (9,10). This disparity constitutes a major obstacle in establishing the effectiveness of treatment modalities in diverse pediatric populations. The aim of this commentary is to review the literature on pediatric disparities in recruitment and retention, and to identify policies and evidence-based strategies with the potential to improve minority participation and completion in clinical trials.

show abstract

“…Twenty years after the National Institutes of Health issued guidelines to increase representation of underserved people, including those of minority races and ethnicities and people of low socioeconomic status (SES) in health research, researchers still strive to recruit and enroll diverse research samples (Freedman et al, 1995; Nicholson, Schwirian, & Groner, 2015). Participation of underserved groups in health research is extremely important because people of non- White race, Latino ethnicity, and low SES are more likely to experience worse health status (Nelson, 2002).…”

mentioning

confidence: 99%

A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants

García

Zuñiga

Lagon³

2016

J Transcult Nurs

View full text Add to dashboard Cite

People from non-White racial groups and other underserved populations, including Latinos, are frequently reluctant to participate in research. Yet their participation into research is foundational to producing information that researchers and health care providers need to address health disparities. The purpose of this article is to describe challenges we have encountered along with culturally relevant strategies we used in five research studies to recruit Mexican American participants from community settings, some of whom were also of low socioeconomic status. We found that the most effective recruitment strategies reflect the common cultural values of personalismo, simpátia, confianza, respeto, and familismo.

show abstract

Recruitment and retention strategies in clinical studies with low-income and minority populations: Progress from 2004–2014

Cited by 128 publications

References 55 publications

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

Policy solutions to recruiting and retaining minority children in research

A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants

Contact Info

Product

Resources

About