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. 2020 May 1;27(5):717-725.
doi: 10.1093/jamia/ocaa012.

Racial differences in patient consent policy preferences for electronic health information exchange

Carolyn L Turvey  1   2   3   4 , Dawn M Klein  2   3   4   5 , Kim M Nazi  6 , Susan T Haidary  7 , Omar Bouhaddou  8   9 , Nelson Hsing  8 , Margaret Donahue  8
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Free PMC article

Racial differences in patient consent policy preferences for electronic health information exchange

Carolyn L Turvey et al. J Am Med Inform Assoc. .
Free PMC article

Abstract

Objective: This study aimed to explore the association between demographic variables, such as race and gender, and patient consent policy preferences for health information exchange as well as self-report by VHA enrollees of information continuity between Veterans Health Administration (VHA) and community non-VHA heath care providers.

Materials and methods: Data were collected between March 25, 2016 and August 22, 2016 in an online survey of 19 567 veterans. Three questions from the 2016 Commonwealth Fund International Health Policy Survey, which addressed care continuity, were included. The survey also included questions about consent policy preference regarding opt-out, opt-in, and "break the glass" consent policies.

Results: VHA enrollees had comparable proportions of unnecessary laboratory testing and conflicting information from providers when compared with the United States sample in the Commonwealth Survey. However, they endorsed medical record information being unavailable between organizations more highly. Demographic variables were associated with gaps in care continuity as well as consent policy preferences, with 56.8% of Whites preferring an opt-out policy as compared with 40.3% of Blacks, 44.9% of Hispanic Latinos, 48.3% of Asian/Pacific Islanders, and 38.3% of Native Americans (P < .001).

Discussion: Observed large differences by race and ethnicity in privacy preferences for electronic health information exchange should inform implementation of these programs to ensure cultural sensitivity. Veterans experienced care continuity comparable to a general United States sample, except for less effective exchange of health records between heath care organizations. VHA followed an opt-in consent policy at the time of this survey which may underlie this gap.

Keywords: consent policy; health disparities, privacy, consent, Electronic Health Records, racial/ethnic disparities; health information exchange.

Figures

Figure 1
Figure 1
Veteran reported gaps in care continuity as compared with the United States and international participants in the 2016 Commonwealth Survey. Data from the United States, Canada, and the United Kingdom are reported with permission.
Figure 2
Figure 2
Racial differences in veteran consent policy preference for electronic health information exchange.
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