Public Health Informatics in the 21st Century

Mirroring the nation's health care delivery system, the US public health system is also highly fragmented.1 An estimated 70 000 information systems are deployed by approximately 160 000 entities providing public health services, including federal agencies; state and local health departments; laboratories; health care facilities; and community-based organizations.2,3 Across publicly funded human immunodeficiency virus (HIV) prevention, treatment, and care programs, this fragmentation may result in suboptimal allocation of resources, impede the integration of core services, and adversely affect health outcomes for persons at risk for or living with HIV.4

The Emerging Digital Era

Several federal initiatives address this fragmentation. The American Recovery and Reinvestment Act of 2009 [Public Law 111-5] and the 2009 Health Information Technology for Economic and Clinical Health Act have invested nearly $26 billion for secure, interoperable, information systems to optimize the performance of the health delivery system.5,6 Furthermore, the Patient Protection and Affordable Care Act of 2010 [Public Law 111-148] seeks to expand access to medical care, improve health outcomes, and lower health care costs, in part by promoting data-based decision making through broader use of electronic health records.7,8

In 2010, the White House released the National HIV/AIDS Strategy for the United States, calling for a more coordinated national response to the HIV epidemic by improving mechanisms to monitor and evaluate progress; standardizing data collection; and reducing reporting burden for federal grantees providing HIV prevention, treatment, and care services.9 Finally, the White House issued the 2012 Digital Government strategy, which espouses the use of government data to deliver a higher quality of services for all Americans.10 Taken together, these initiatives lay the foundation for integrated medical and public health informatics systems that will inform the planning, deployment, and evaluation of federally funded programs and improve individual- and population-level health outcomes.

New Opportunities, Old Challenges

In 2012, US Department of Health and Human Services released a request for information for input on how an integrated data system can lead to improvements in federally funded HIV programs.11 Respondents representing state and local health departments, professional organizations, industry, and health centers noted the following opportunities: greater transparency of federal and nonfederal HIV resources to better inform local planning processes; more collaborative, reciprocal, and error-free data sharing between government, state, local, and tribal providers of HIV services; increased standardization, streamlining, and efficient use of programmatic data from siloed funding streams; reduced reporting burden through automated report generation; and enhanced integration of prevention, treatment, and care services through greater interoperability of data systems, including electronic medical records and laboratory reports. In short, an integrated data system has the potential to improve efficiencies and increase access to quality data, information, and knowledge that benefit program administrators, managers, and, most importantly, recipients of program services.12

Establishing an integrated HIV data system will require surmounting several challenges; chief among them is mobilizing the necessary fiscal and human resources needed to develop, implement, and monitor such a system. Furthermore, it will require resolving real and perceived barriers to information sharing, including overly cautious interpretations of the privacy requirements, confusion over when consent is required for data sharing, restrictive privacy provisions for third parties (eg, community-based organizations), and nonstandard security standards.13

Future Directions

Even so, integrated HIV data systems are within reach. In Washington, DC, the Department of Health adapted for local use the Massachusetts Virtual Epidemiological Network to streamline the error-free collection of approximately 600 data elements associated with HIV and sexually transmitted disease surveillance, manage federal reporting requirements, monitor program utilization, de-duplicate client-specific services data, and automatically generate reports. These steps are expected to facilitate monitoring of program quality, define optimal distribution of services, and identify new opportunities for community-based organizations to engage in focused HIV testing, care navigation, linkage to and retention in HIV medical care (Tiffany West, MPH, e-mail communication, February 23, 2012). Similarly, the Louisiana Public Health Information Exchange demonstrated the feasibility of a secure, public health informatics solution that links statewide surveillance data with patient-level electronic medical records, resulting in a system that provides decision support in real-time in a manner that maximizes opportunities for clinical and public health intervention.14

Supported by technological advances and converging priorities, we face meaningful and attainable opportunities to integrate HIV data systems in support of improved program management and enhanced client services. Recent advances at US Department of Health and Human Services and other governmental departments offer lessons for real-time, reciprocal data sharing and interoperability between data systems that are aligned with national goals and policies.15 Taken together, they provide a path toward a fully integrated health information system for persons who are served by federally funded HIV prevention, treatment, and care programs and offer the potential to simplify grants administration, preserve program accountability, and improve health outcomes at the individual and population levels.3

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