Information Infrastructure for Public Health and Health Research: Findings from a Large-Scale HIE Stakeholder Study

While the information infrastructure to support public health and health research has been dramatically improving, comprehensive, nation-wide, longitudinal, person-centered information has been generally nonexistent. Yet, having such information for large populations is essential to public health and health research. The coupling of internet access, information standards and emerging electronic health records is beginning to provide an enabling infrastructure for population-wide health information capture and transfer. However, the essential infrastructure component that is still missing is effective health information exchange (HIE) that has specific public health and health research-supporting functionality at nation-wide, state-wide and community-wide levels. To better understand the requirements for HIE at a community-wide level, our exploratory research investigated needs and attitudes of over 1200 stakeholders including members of public health, health research and consumer sectors. This paper reports on the study's finding including the functional and infrastructure recommendations of public health and health research stakeholders, and the resultant design attributes for a consumer-centric community HIE which could be linked into a nation-wide HIE network for purposes of improving care, decreasing health related costs and supporting research.