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Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults

Building trust in research through information and intent transparency with health information:... ObjectiveParticipation in healthcare research shapes health policy and practice; however, low trust is a barrier to participation. We evaluated whether returning health information (information transparency) and disclosing intent of data use (intent transparency) impacts trust in research.Materials and MethodsWe conducted an online survey with a representative sample of 502 US adults. We assessed baseline trust and change in trust using 6 use cases representing the Social-Ecological Model. We assessed descriptive statistics and associations between trust and sociodemographic variables using logistic and multinomial regression.ResultsMost participants (84%) want their health research information returned. Black/African American participants were more likely to increase trust in research with individual information transparency (odds ratio (OR) 2.06 [95% confidence interval (CI): 1.06–4.34]) and with intent transparency when sharing with chosen friends and family (3.66 [1.98–6.77]), doctors and nurses (1.96 [1.10–3.65]), or health tech companies (1.87 [1.02–3.40]). Asian, Native American or Alaska Native, Native Hawaiian or Pacific Islander, Multirace, and individuals with a race not listed, were more likely to increase trust when sharing with health policy makers (1.88 [1.09–3.30]). Women were less likely to increase trust when sharing with friends and family (0.55 [0.35–0.87]) or health tech companies (0.46 [0.31–0.70]).DiscussionParticipants wanted their health information returned and would increase their trust in research with transparency when sharing health information.ConclusionTrust in research is influenced by interrelated factors. Future research should recruit diverse samples with lower baseline trust levels to explore changes in trust, with variation on the type of information shared. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the American Medical Informatics Association Oxford University Press

Building trust in research through information and intent transparency with health information: representative cross-sectional survey of 502 US adults

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References (58)

Publisher
Oxford University Press
Copyright
© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com
ISSN
1067-5027
eISSN
1527-974X
DOI
10.1093/jamia/ocac084
Publisher site
See Article on Publisher Site

Abstract

ObjectiveParticipation in healthcare research shapes health policy and practice; however, low trust is a barrier to participation. We evaluated whether returning health information (information transparency) and disclosing intent of data use (intent transparency) impacts trust in research.Materials and MethodsWe conducted an online survey with a representative sample of 502 US adults. We assessed baseline trust and change in trust using 6 use cases representing the Social-Ecological Model. We assessed descriptive statistics and associations between trust and sociodemographic variables using logistic and multinomial regression.ResultsMost participants (84%) want their health research information returned. Black/African American participants were more likely to increase trust in research with individual information transparency (odds ratio (OR) 2.06 [95% confidence interval (CI): 1.06–4.34]) and with intent transparency when sharing with chosen friends and family (3.66 [1.98–6.77]), doctors and nurses (1.96 [1.10–3.65]), or health tech companies (1.87 [1.02–3.40]). Asian, Native American or Alaska Native, Native Hawaiian or Pacific Islander, Multirace, and individuals with a race not listed, were more likely to increase trust when sharing with health policy makers (1.88 [1.09–3.30]). Women were less likely to increase trust when sharing with friends and family (0.55 [0.35–0.87]) or health tech companies (0.46 [0.31–0.70]).DiscussionParticipants wanted their health information returned and would increase their trust in research with transparency when sharing health information.ConclusionTrust in research is influenced by interrelated factors. Future research should recruit diverse samples with lower baseline trust levels to explore changes in trust, with variation on the type of information shared.

Journal

Journal of the American Medical Informatics AssociationOxford University Press

Published: Jun 14, 2022

Keywords: transparency; trust; patient-reported outcomes; health informatics; recruitment

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