title: Research participation by low-income and racial/ethnic minority groups: how payment may change the balance.
abstract: Minorities are underenrolled in clinical research trials, and one-third of trials are underenrolled overall. The role of payment has not been studied at the national level as an explanation for enrollment patterns. Our objective was to examine the distribution of self-reported previous research participation across different sociodemographic groups; to assess the public's perception of fair payment for a low-risk medicine trial and the association between requested payment and sociodemographic characteristics; to estimate the amount of payment for a medication trial to achieve proportional representation of minorities and different socioeconomic groups. This was a cross-sectional study with nationally representative data collected in 2011 by the C.S. Mott Children's Hospital National Poll on Children's Health. To determine the relationship between perceived fair payment and individual-level characteristics, we used multivariable linear regression. With 60% participation rate, in a sample of 2,150 respondents 11% (n = 221) of the sample had previously participated in medical research. Requested payment differed significantly by racial/ethnic group with Hispanics requesting more payment than non-Hispanic whites (0.37 [95%CI 0.02, 0.72]) In contrast to payment at $49, $149, and $249, payment at $349 yielded proportional representation of racial/ethnic minority groups. Hispanics requested higher payment for research participation, suggesting a possible explanation for their underenrollment.
authors.affiliation: Department of Pediatrics, Children's Hospital of Philadelphia associated with the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Jennifer K
authors.initials: JK
authors.lastname: Walter
authors.forename: James F
authors.initials: JF
authors.lastname: Burke
authors.forename: Matthew M
authors.initials: MM
authors.lastname: Davis
mesh_terms: D000328:Adult; D035843:Biomedical Research / Q000191:economics*; D003430:Cross-Sectional Studies; D003710:Demography; D005006:Ethnicity; D005260:Female; D006801:Humans; D007182:Income; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D012959:Socioeconomic Factors; D055815:Young Adult
keywords: Hispanic; income; payment; public; race; research