Creating Sustainable Local Health Information Exchanges: Can Barriers to Stakeholder Participation be Overcome?

Originally published as HSC Research Brief No. 2 by the Center for Studying Health System Change (HSC), February 2008. HSC was a nonpartisan policy research organization funded principally by the Robert Wood Johnson Foundation.

Creating Sustainable Local Health Information Exchanges: Can Barriers to Stakeholder Participation Be Overcome?

Local health information exchanges (HIEs) held the promise of collecting patient clinical data across care settings to provide more complete and timely information for treatment, support quality improvement and reporting, enable public health surveillance, and facilitate clinical research. But a joint study by the Center for Studying Health System Change and the National Institute for Health Care Management Foundation found that barriers to achieving meaningful data exchange remained high. Concerns about losing competitive advantage and potential data misuse made providers and health plans reluctant to contribute patient data. Uncertainty about who would ultimately benefit from HIEs further dampened stakeholder willingness to fund the exchanges.

Connecting Electronic Data Among Disparate Providers

Patients in the United States typically received care from multiple unaffiliated providers that maintained separate medical records, mostly on paper. To capture the full benefits of health information technology, providers needed not only to adopt electronic medical records within their own organizations but also to share data electronically so that any physician could access a patient's clinical information regardless of where care was delivered. HIEs were the organizations designed to support this electronic sharing of clinical data among independent hospitals, physicians, and other stakeholders in a community. By giving physicians more timely and comprehensive records at the point of care, HIEs had the potential to improve coordination, reduce duplicative testing, and boost both quality and efficiency.

HIEs became a central component of the federal government's 2004 strategy to develop a national health information network. But despite their potential benefits, few exchanges existed before federal promotion efforts began. The subsequent startup wave was followed by several high-profile shutdowns, raising fears that many new exchanges might follow the same path as the failed community health information networks of the 1990s.

Four Exchanges at Different Stages

The study examined stakeholder perspectives on participation in four HIEs at different stages of development. The more established exchanges -- Cincinnati-based HealthBridge and the Indiana Health Information Exchange (IHIE) -- had achieved some viability by meeting a specific business need: more efficient delivery of hospital test results to physicians. The newer exchanges -- CareSpark, serving northeast Tennessee and southwest Virginia, and the Tampa Bay Regional Health Information Organization -- struggled to identify and finance initial services without a similar critical mass of hospital participation.

Stakeholder Concerns Shape Exchange Design

Hospitals were the linchpin for achieving critical mass in the more mature exchanges. Their greatest concern was controlling access to data. Hospitals worried that sharing patient information could erode their competitive position by making it easier for rival facilities or physician groups to identify and recruit patients. These concerns shaped exchange architecture: both HealthBridge and IHIE adopted models that allowed hospitals to maintain control over their data while enabling targeted sharing of clinical results with treating physicians.

Employers and health plans largely remained on the sidelines. Employers were interested in the quality reporting that aggregated HIE data could enable but were not willing to fund exchanges in the absence of clear evidence of return on investment. Health plans were wary of contributing their own claims data, seeing it as a competitive asset. Physicians were ambivalent about clinical messaging services: some valued receiving electronic test results, while others questioned whether the incremental benefit justified the effort and cost of participating.

Quality Initiatives and Broader Challenges

While narrow data exchange efforts that improved transaction efficiency represented a pragmatic first step toward overcoming participation barriers, expanding HIEs to support the broad-based data exchange needed for quality reporting and pay-for-performance activities presented far greater challenges. All four exchanges were exploring quality-related initiatives, but engaging stakeholders in these efforts proved difficult. Providers worried about how performance data would be used, and the lack of standardized quality measures across settings complicated efforts to aggregate meaningful data.

Implications

The study underscored the gap between the vision of seamless health information exchange and the on-the-ground realities of competing interests, funding uncertainties, and privacy concerns. Achieving sustainable HIEs would require addressing stakeholders' legitimate concerns about data control and competitive impact while demonstrating tangible value that justified ongoing investment. Without these conditions, the promise of comprehensive electronic health data exchange would remain out of reach for most communities.

Sources and Further Reading

Grossman, Joy M., Kathryn L. Kushner, and Elizabeth A. November, HSC Research Brief No. 2, February 2008. | National Institute for Health Care Management Foundation joint study on HIE stakeholder perspectives. | Federal health IT strategy and the national health information network initiative, 2004.