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

Area of Science:

• Health Informatics
• Health Services Research
• Patient Privacy

Background:

• Patient consent policies for health information exchange are crucial for data sharing and care continuity.
• Understanding demographic influences on these preferences is essential for equitable implementation.
• Veterans Health Administration (VHA) enrollees' experiences with care continuity and data exchange require examination.

Purpose of the Study:

• To investigate the association between demographic variables (race, gender) and patient consent policy preferences for health information exchange.
• To assess self-reported information continuity among VHA enrollees between VHA and non-VHA healthcare providers.
• To identify disparities in consent preferences and care continuity based on race and ethnicity.

Main Methods:

• An online survey was administered to 19,567 VHA enrollees between March and August 2016.
• The survey included questions on care continuity and preferences for opt-out, opt-in, and "break the glass" consent policies.
• Data were analyzed to identify associations between demographic variables, consent preferences, and reported care continuity.

Main Results:

• VHA enrollees reported challenges with medical record availability between healthcare organizations, more so than the general US population.
• Significant differences in consent policy preferences were observed across racial and ethnic groups (e.g., White vs. Black, Hispanic, Asian, Native American veterans).
• Demographic variables were associated with gaps in care continuity and varying consent policy preferences.

Conclusions:

• Racial and ethnic disparities in electronic health information exchange privacy preferences necessitate culturally sensitive implementation strategies.
• While overall care continuity was comparable to the general US sample, VHA's opt-in consent policy may contribute to fragmented health record exchange.
• Addressing these gaps is vital for improving patient experience and ensuring effective healthcare delivery for veterans.