The development of community-based health information exchanges: A comparative assessment of organizational models

The purpose of this dissertation research was to critically examine the development of community-based health information exchanges (HIEs) and to comparatively analyze the various models of exchanges in operation today nationally. Specifically this research sought to better understand several aspects of HIE: policy influences, organizational evolution, and major differences in their business and technical models. Six key federal health policies and their intended and unintended consequences and outcomes have contributed towards the development of health information technology which can be translated across systems, dubbed interoperability. These policies have helped shape the evolution of HIE organizations; and different interpretations and understandings have led to various organizational approaches across hundreds of HIEs. A better understanding of the drivers and models has the potential for improving clinical quality, efficiency, and overall care coordination in the fragmented healthcare marketplace. That is the purpose of this research. This study employed multi-method qualitative methods to examine HIE organizational models. There are three main research aims of this study that are focused around health policy implications, organizational models, and industry evolution. Findings suggest that HIEs appear to be well positioned to attack the longer-term, strategic performance of the industry; and there are commonalities in the models deployed around the country. The commonalities suggest that newer HIEs may be learning from the past failures and successes of older organizations, and further, may represent an industry which thrives in an environment of shared goals and experiences nationally. Findings suggest that health information exchange networks should aim for achieving critical mass and sufficient scale to maintain momentum and ensure survivability (with the average in this study of 6.6 years in operational existence. Nearly all organizations (92%) have adopted a participation or transaction fee structure generated from a wide variety of stakeholders (providers, payers, systems). There was less evidence of purely federated (or decentralized) technical models than expected, especially given the complexity of privacy and security regulations that make storage of data problematic. Most HIEs (72%) have adopted a hybrid or centralized data model approach. An opt-in model requiring patients to expressly consent for their data to be shared is the least risky; however, more organizations (64%) have adopted an opt-out approach that assumes authorization for data sharing until the patient states otherwise. Implications and recommendations based on findings offered here could help lay the foundation for a better understanding of HIE development and for ensuring the long-term viability and success of health exchange interoperability for the industry