A Mixed Methods Study of Health Information Exchange Consent for Persons Living with Human Immunodeficiency Virus

Health information exchange (HIE) has the potential to improve care quality through improved information sharing and coordination of care. In Phase 1, a sociotechnical analysis was conducted at one HIV clinic to explore the interrelated factors that affect the consent of persons living with HIV (PLWH) to electronically share their protected health information (PHI) through a HIE. The findings of the sociotechnical analysis revealed that there is not a single solution that can adequately address the complex, interrelated issues that affect PLWH decision to electronically share PHI. Improvement in the consent process was selected as the target of intervention for Phase 2, which focused on designing and pilot testing a prototype HIE eConsent iPad app at the HIV clinic. A one-group post-test design examined if HIV clinic patients preferred the eConsent or the paper consent. Semi-structured interviews were used to assess overall comprehension of HIE after reading both consents. Over half of the participants favored eConsent as compared to paper consent. The proportion of participants who were able to verbalize essential components of HIE were as follows: more than one component – 35%, one component - 20%, and no component – 45%. While racially and ethnically diverse, the sample was well-educated (50% with a college degree); however, the low comprehension levels suggested that educational attainment was insufficient for HIE comprehension. A hybrid approach that integrates discussion with knowledgeable personnel and multimedia usage may be useful to convey complex information and facilitate HIE comprehension.