Consumer acceptability in the Louisiana Public Health Information Exchange (LaPHIE) - doing the “right thing”

The Louisiana Public Health Information Exchange is a bi-directional electronic health information exchange (HIE) which communicates sensitive health information between participating public hospitals on out of care persons with HIV/AIDS, Tuberculosis and syphilis. Partners include the Louisiana State University public hospital system, the State of Louisiana, Department of Health and Hospitals, Office of Public Health and the Louisiana Public Health Institute. With technical capabilities and local public health infrastructure facilitating public HIEs to improve timely diagnosis and treatment, the question for the LaPHIE Compliance and Ethics work group became, “Public health information can be exchanged, but should it?” Consumer input was elicited through focus groups and key informant interviews to understand consumer attitudes, and the acceptability of data sharing to intervene with patients unaware of their disease status or lost to care and in need of follow-up. With the National Alliance for Health Information Technology and Focus Research, Inc., 16 focus groups (149 persons) in rural and urban Louisiana were conducted. Participants were of diverse race, gender, employment and insurance status and diagnosed with chronic illness, behavioral health, or STDs (including HIV). Twenty-three follow-up interviews with individuals diagnosed with HIV or STD and matched controls from the Greater New Orleans area corroborated FGD findings. Consumers were accepting of electronic health records and exchange of public health information to improve care. Consumer considerations included: control and access of health information, secure transfer, limited communication of diagnosis (doctor or nurse), option for re-testing, and removal of the message/notice once intervention occurs. The messaging system and training components were designed to address all consumer considerations. When developing a public health information exchange it is essential to identify ethical considerations and consumer attitudes. As HIEs become more common, consumer acceptability research and careful ethical consideration should be required foundational components in any design.