Dataset Information

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

ABSTRACT:

Objective

Participation 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 methods

We 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.

Results

Most 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]).

Discussion

Participants wanted their health information returned and would increase their trust in research with transparency when sharing health information.

Conclusion

Trust 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.

SUBMITTER: Mangal S

PROVIDER: S-EPMC9382374 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

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

Mangal Sabrina S Park Leslie L Reading Turchioe Meghan M Choi Jacky J Niño de Rivera Stephanie S Myers Annie A Goyal Parag P Dugdale Lydia L Masterson Creber Ruth R

Journal of the American Medical Informatics Association : JAMIA 20220801 9

<h4>Objective</h4>Participation 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.<h4>Materials and methods</h4>We 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-Ecolo ...[more]

PMID: 35699571

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Dataset Information

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

Objective

Materials and methods

Results

Discussion

Conclusion

Publications

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

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