Are Minority Children Under- or Overrepresented in Pediatric Research?

Walsh, Clare; Ross, Lainie Friedman

doi:10.1542/peds.112.4.890

Cited by 51 publications

(43 citation statements)

References 34 publications

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“…23 Our work provides a different perspective, highlighting the central role of trust in the engagement of these communities. In support of this view, Wendler et al 3 found that when approached, minorities were no less likely to participate in research-and perhaps were even more receptive to participation.…”

Section: Discussionmentioning

confidence: 95%

Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Getrich

Sussman

Campbell-Voytal

et al. 2013

The Annals of Family Medicine

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PURPOSE Practice-based research networks (PBRNs) are increasingly seen as important vehicles to translate research into practice, although less is known about the process of engaging diverse communities in PBRN research. The objective of this study was to identify strategies for successfully recruiting and retaining diverse racial/ethnic communities into PBRN research studies.METHODS This collaborative, multisite study engaged 5 of the 8 networks of the PRImary care MultiEthnic Network (PRIME Net) consortium that conducts research with traditionally underrepresented/underserved populations. We used a sequential, qualitative research design. We first conducted 1 key informant interview with each of 24 researchers experienced in recruiting research participants from 5 racial/ethnic communities (African American, Arab/Chaldean, Chinese, Hispanic, and Native American). Subsequently, we conducted 18 focus groups with 172 persons from these communities.RESULTS Participants' comments indicated that successful recruitment and retention of underrepresented populations in PBRN studies is linked to the overall research process. This process, which we termed the cycle of trust, entailed developing and sustaining relationships of trust during 4 interrelated stages: before the study, during study recruitment, throughout study conduct, and after study completion. Participants identified a set of flexible strategies within each stage and called for close engagement with clinic and community partners.CONCLUSIONS Our participants suggest that approaches to research that lay a foundation of trust, demonstrate respect for community members, and extend beyond the enrollment and data collection phases are essential to enhance the participation of diverse populations in PBRN research. These findings offer the PBRN community a guide toward achieving this important goal. 2013;550-558. doi:10.1370/afm.1543. Ann Fam Med INTRODUCTIONN ational leaders in the United States are insisting on more rapid translation of research into practice, greater applicability of research to everyday practice, and inclusion of diverse populations in the research effort. With regard to the last, diverse populations are consistently underrepresented in clinical research studies. [1][2][3][4] Although practice-based research networks (PBRNs) have drawn attention as mechanisms to facilitate the goals of speeding translation of research into practice, less is known about the process of engaging diverse communities in PBRN research.PBRNs have a long history of working with primary care clinicians to generate research ideas and facilitate study recruitment, 5 and have also sought to engage, though to a lesser degree, patients and community members in the research process. 6 They are well positioned to access diverse patient populations and contexts. 7 Despite this potential, we are not aware of any systematic examinations of how PBRNs engage a wide range of racial/ethnic groups in the research enterprise.Failure to recruit and enroll diverse racial/ethnic g...

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Section: Discussionmentioning

confidence: 95%

Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Getrich

Sussman

Campbell-Voytal

et al. 2013

The Annals of Family Medicine

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“…In the past ten years, inclusion of ethnic and racial minorities in clinical trials has improved, but significant deficiencies remain in reporting the racial and ethnic make up of the population studied [4]. This was true in 40% of the pediatric studies cited by Walsh and Ross [5]. More recently, in 2011, Geller and colleagues published an analysis of clinical trials published in major medical journals; one-fifth of the studies did not report sample sizes by racial and ethnic groups, and 64% did not provide any analysis by racial or ethnic groups [6].…”

Section: Introductionmentioning

confidence: 99%

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

Nicholson

Schwirian

Groner

2015

Contemporary Clinical Trials

129

121

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“…6,7 The findings suggested that child health research infrequently reports race and ethnicity and even less frequently reports socioeconomic status (SES). 6,7 The authors proposed that future research examine the extent of reporting of race/ethnicity and SES coding for specific disease states and determine whether there has been a change in reporting over time, with increased interest in health disparities. In this study, we examined the changes in reporting of race, ethnicity, and SES, in comparison with age and gender, in the past decade.…”

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confidence: 99%

Changes in Reporting of Race/Ethnicity, Socioeconomic Status, Gender, and Age Over 10 Years

Brahan

Bauchner

2005

Pediatrics

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ABSTRACT. Background. The recognition of health disparities as an important aspect of US health care has led to renewed interest in the reporting of race/ethnicity and socioeconomic status (SES) in original research reports.Purpose. To describe reporting of race/ethnicity and SES, in comparison with age and gender, and to report changes with time.Methods. All original research articles that focused on children and asthma that were published in The Results. In 1991-1993, 27 reports met the inclusion criteria; in 2000 -2002, 74 were reviewed. Overall, significantly more reports described age (90.1%) and gender (78.2%) than SES (41.6%) and race/ethnicity (54.5%). During the 2 study periods, there were significant increases in studies reporting race/ethnicity (from 29.6% to 63.5%) but not in studies reporting SES or gender. Coding of race/ethnicity, even in the later time period, was largely confined to white (78.7%) and black (89.4%). Fewer reports coded Latino (55.3%) or Asian (14.9%). Only 2 of the 31 articles that coded Latino subjects contained information on ethnic subgroups, whereas none of the 8 articles included Asian subgroups.Conclusions. Original research reports in a specific area (asthma) for which health disparities have been well documented still contain few data on race/ethnicity and SES, particularly in comparison with age and gender. There has been some improvement in the past decade in the reporting of race/ethnicity, but the reporting of Latino and Asian subgroups remains poor. If we are to understand health disparities, then more appropriate reporting of SES and race/ethnicity is necessary. Pediatrics 2005;115:e163-e166. URL: www.pediatrics.org/cgi

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Are Minority Children Under- or Overrepresented in Pediatric Research?

Abstract: Overall, we found an overrepresentation of black subjects and an underrepresentation of white and Hispanic subjects with significant variations depending on the type of research.

Cited by 51 publications

References 34 publications

Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

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

Changes in Reporting of Race/Ethnicity, Socioeconomic Status, Gender, and Age Over 10 Years

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