Health Care Stakeholder Participation in Health Information Exchanges

This case study examined four different health information exchange (HIE) organizations to explore stakeholders’ perspectives on benefits and barriers of participating in health information exchange. The main objective of the project was to answer the following research questions:

• How does stakeholder participation in HIEs vary across communities?
• How do the major stakeholders assess the value of participating in an HIE?
• What are the facilitators of and barriers to stakeholder participation in HIEs?
• How does key stakeholder participation (or lack of it) affect the initiation development and sustainability of HIEs?
• What strategies do HIEs use, if any – including governance, organizational, technical, and business models – to facilitate stakeholder participation?

This project team conducted a comparative case study of four HIEs at varying levels of maturity: Cincinnati-based HealthBridge; the Indiana Health Information Exchange (IHIE); CareSpark; serving northeast Tennessee and southwest Virginia; and the Tampa Bay Regional Health Information Organization (RHIO). The former two are mature HIE organizations actively exchanging data; the latter two at the time of this project were both in the planning and development phase. The goal of this study was to bring stakeholders together to explore the incentives for joining a local HIE or RHIO and to understand the benefits and barriers of participating.

Discussions were held with all four HIE organizations between February and August 2007. The researchers found that there are barriers to successful HIE organizations. While stakeholder engagement is key to success, initial broad stakeholder participation tends to drop rapidly. In general, stakeholders, including health plans and employers, appeared unwilling to collectively pay enough to sustain HIEs. As found by the research team, HealthBridge and IHIE have had success by delivering hospital test results efficiently to clinicians, meeting a specific business need in their communities. However, the team found that CareSpark and the Tampa Bay RHIO lack similar robust hospital participation and so have struggled to identify and finance initial services.

In all four study communities, provider organizations faced substantial disincentives and few incentives to share data with organizations they are not affiliated with. Stakeholders reported uncertainty about who benefits from data exchange, which negatively affects their willingness to fund these HIEs. Providers and health plans reported ongoing hesitation about providing data to the exchanges due to concerns about the potential loss of competitive advantage and the misuse of data.

The study notes that development of “niche” data exchanges— those in which a specific business need is identified and a private exchange is established to satisfy it— are on the rise. These niche exchanges will likely continue to be formed and proliferate, especially in the face of greater health information technology (IT) adoption by organizations and the increased capability for interoperability.