M Smirnoff1, I Wilets1, D F Ragin2, R Adams3, J Holohan4, R Rhodes1, G Winkel1, E M Ricci5, C Clesca1, L D Richardson1. 1. a Department of Emergency Medicine , Icahn School of Medicine at Mount Sinai. 2. b Department of Psychology , Montclair State University. 3. c National Health Service. 4. d Department of Nursing , New York Presbyterian Weill Cornell Hospital. 5. e Graduate School of Public Health , University of Pittsburg.
Abstract
BACKGROUND: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust. METHODS: A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%). RESULTS: Generally favorable attitudes toward research were expressed by a majority (85.3%), but many respondents expressed mistrust. Factor analysis yielded four specific domains of trust/mistrust, each of which was associated with different demographic variables: general trustworthiness (older age, not disabled); perceptions of discrimination (African American, Latino, Spanish language preference); perceptions of deception (prior research experience, African American); and perceptions of exploitation (less education). CONCLUSIONS: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust among disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.
BACKGROUND: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust. METHODS: A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%). RESULTS: Generally favorable attitudes toward research were expressed by a majority (85.3%), but many respondents expressed mistrust. Factor analysis yielded four specific domains of trust/mistrust, each of which was associated with different demographic variables: general trustworthiness (older age, not disabled); perceptions of discrimination (African American, Latino, Spanish language preference); perceptions of deception (prior research experience, African American); and perceptions of exploitation (less education). CONCLUSIONS: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust among disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.
Entities:
Keywords:
disability; ethnicity; limited English proficiency; race; research mistrust; research trust
Authors: Giselle Corbie-Smith; Angela R Bryant; Deborah J Walker; Connie Blumenthal; Barbara Council; Dana Courtney; Ada Adimora Journal: Prog Community Health Partnersh Date: 2015
Authors: Seth W Glickman; Adanma Ndubuizu; Kevin P Weinfurt; Carol D Hamilton; Lawrence T Glickman; Kevin A Schulman; Charles B Cairns Journal: Acad Med Date: 2011-03 Impact factor: 6.893
Authors: Joel B Braunstein; Noëlle S Sherber; Steven P Schulman; Eric L Ding; Neil R Powe Journal: Medicine (Baltimore) Date: 2008-01 Impact factor: 1.889
Authors: Patricia Peterson; Paula McNabb; Sai Ramya Maddali; Jennifer Heath; Scott Santibañez Journal: Public Health Rep Date: 2019-03-26 Impact factor: 2.792
Authors: Linda Behar-Horenstein; Rueben C Warren; V Wendy Setiawan; Corey Perkins; Thomas D Schmittgen Journal: Cancer Health Disparities Date: 2020-12