208131 Consumer acceptability in the Louisiana Public Health Information Exchange (LaPHIE) - doing the “right thing”

Monday, November 9, 2009: 8:50 AM

Jane Herwehe, MPH , Louisiana State University, Health Care Services Division, Baton Rouge, LA
Susan Bergson, MPH , Health Systems Development- HIV/AIDS Programs, Louisiana Public Health Institute, New Orleans, LA
Jane Horowitz, BA , Chief Operating Officer, The National Alliance for Health Information Technology, Chicago, IL
Kirsty Nunez , Focus Research, Inc., Covington, LA
Lisa Longfellow , Office of Public Health, Louisiana Department of Health and Hospitals, New Orleans, LA
Manya Magnus, PhD, MPH , The George Washington University, School of Public Health and Health Sciences, Department of Epidemiology and Biostatistics, Washington, DC
Amy Zapata, MPH , Louisiana Office of Public Health, HIV/AIDS Program, New Orleans, LA
Michelle Murtaza-Rossini, MPH , Louisiana State University, Health Care Services Division, Baton Rouge, LA
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.

Learning Objectives:
1.Discuss the importance of consumer acceptability research when building a health information exchange (HIE) such as the Louisiana Public Health Information Exchange (LaPHIE) 2.Identify key findings from the consumer research 3.Explain how findings from consumer research were translated into the design and implementation of LaPHIE

Keywords: Communicable Disease, Information System Integration

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am represent LSU HCSD one of the partners on the Louisiana Public Health Information Exchange initiative and have led our partnership efforts.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.