Journal of the American Medical Informatics Association : JAMIA | 2019

Count me in: using a patient portal to minimize implicit bias in clinical research recruitment

 
 
 
 
 
 
 
 
 
 
 
 

Abstract


OBJECTIVE\nDetermine whether women and men differ in volunteering to join a Research Recruitment Registry when invited to participate via an electronic patient portal without human bias.\n\n\nMATERIALS AND METHODS\nUnder-representation of women and other demographic groups in clinical research studies could be due either to invitation bias (explicit or implicit) during screening and recruitment or by lower rates of deciding to participate when offered. By making an invitation to participate in a Research Recruitment Registry available to all patients accessing our patient portal, regardless of demographics, we sought to remove implicit bias in offering participation and thus independently assess agreement rates.\n\n\nRESULTS\nWomen were represented in the Research Recruitment Registry slightly more than their proportion of all portal users (n\u2009=\u2009194\xa0775). Controlling for age, race, ethnicity, portal use, chronic disease burden, and other questionnaire use, women were statistically more likely to agree to join the Registry than men (odds ratio 1.17, 95% CI, 1.12-1.21). In contrast, Black males, Hispanics (of both sexes), and particularly Asians (both sexes) had low participation-to-population ratios; this under-representation persisted in the multivariable regression model.\n\n\nDISCUSSION\nThis supports the view that historical under-representation of women in clinical studies is likely due, at least in part, to implicit bias in offering participation. Distinguishing the mechanism for under-representation could help in designing strategies to improve study representation, leading to more effective evidence-based recommendations.\n\n\nCONCLUSION\nPatient portals offer an attractive option for minimizing bias and encouraging broader, more representative participation in clinical research.

Volume None
Pages None
DOI 10.1093/jamia/ocz038
Language English
Journal Journal of the American Medical Informatics Association : JAMIA

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