TY - JOUR
T1 - Count me in
T2 - Using a patient portal to minimize implicit bias in clinical research recruitment
AU - Kannan, Vaishnavi
AU - Wilkinson, Kathleen E.
AU - Varghese, Mereeja
AU - Lynch-Medick, Sarah
AU - Willett, Duwayne L.
AU - Bosler, Teresa A.
AU - Chu, Ling
AU - Gates, Samantha I.
AU - Holbein, M. E.Blair
AU - Willett, Mallory M.
AU - Reimold, Sharon C.
AU - Toto, Robert D.
N1 - Funding Information:
Research reported in this publication was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under award Number UL1TR001105. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH
Funding Information:
Research reported in this publication was supported by the National Center for Advancing Translational Sciences of the National Insti- tutes of Health under award Number UL1TR001105. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Publisher Copyright:
© 2019 The Author(s) 2019. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved.
PY - 2019/4/17
Y1 - 2019/4/17
N2 - Objective: Determine 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. Materials and Methods: Under-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. Results: Women were represented in the Research Recruitment Registry slightly more than their proportion of all portal users (n = 194 775). 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. Discussion: This 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. Conclusion: Patient portals offer an attractive option for minimizing bias and encouraging broader, more representative participation in clinical research.
AB - Objective: Determine 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. Materials and Methods: Under-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. Results: Women were represented in the Research Recruitment Registry slightly more than their proportion of all portal users (n = 194 775). 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. Discussion: This 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. Conclusion: Patient portals offer an attractive option for minimizing bias and encouraging broader, more representative participation in clinical research.
KW - Biomedical research
KW - Health care disparities
KW - Patient portals
KW - Patient selection
KW - Sex bias
UR - http://www.scopus.com/inward/record.url?scp=85071354763&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85071354763&partnerID=8YFLogxK
U2 - 10.1093/jamia/ocz038
DO - 10.1093/jamia/ocz038
M3 - Article
C2 - 31081898
AN - SCOPUS:85071354763
SN - 1067-5027
VL - 26
SP - 703
EP - 713
JO - Journal of the American Medical Informatics Association
JF - Journal of the American Medical Informatics Association
IS - 8-9
ER -