What is the health information exchange (HIE)? How should your company think about accessing HIEs?

In this blog, we explain what a health information exchange (HIE) is, why they were built, and what companies should consider when accessing HIEs.  

Brief History of Health Information Exchanges (HIEs)

In the late 1990’s, as computing systems adoption began to really permeate throughout our healthcare system, significant evidence began to emerge on the impacts that dissonant clinical documentation and inefficient medical information exchange had on prescribing errors, misdiagnosis, and overconsumption of healthcare resources. So in 2009, in response to these findings and against the backdrop of the financial crisis, the U.S. federal government enacted the Health Information Technology for Economic and Clinical Health (HITECH) Act as part of the broader American Recovery and Reinvestment Act (ARRA).

The HITECH Act provided funding to further the adoption of technology in healthcare while also creating the Office of the National Coordinator for Information Technology (ONC). Being assigned the permanent authority to promote national adoption of standardized technology enabling the electronic capture and storage of health information - known as Electronic Health Records (EHRs) - ONC was also charged with facilitating the secure use and exchange of interoperable health information. The ONC quickly issued the State HIE Cooperative Agreement,  with the purpose of driving adoption and expanding HIE coverage, The Cooperative Agreement originally released over $500MM in incentive funding to support infrastructure and adoption of Meaningful Use standards - the standards set to define best practices for interoperating EHRs and HIEs.  Adjusting for state and jurisdictional variability, The Cooperative agreement gave broad authority to states and territories to architect HIE methodologies and interoperation deemed most effective for providers of each state. 

Additionally, the passage of ARRA introduced Federal “meaningful use” standards. These standards mandated that the EHR meet interface and data sharing standards for payment and incentives from CMS. Standards definitions are championed by Health Level 7 (HL7), a nonprofit governing body which has evolved alongside emerging technologies.  Following multi-stage processes, the EHR were required to send and receive specific data types that expanded relative to the certification stages. 

Over the next 5-10 years, the Cooperative Agreement cascaded a series of programs and Federal reinvestment efforts aimed at continuing to bolster the exchange of provider-provider information exchange. What has emerged across the nation are a multitude of technically and programmatically diverse entities broadly supporting community health data exchange. There are various types of HIEs currently operating across the U.S. and its territories, including regional or community HIEs, state-wide HIEs, hybrid HIEs such which are collaborations between organizations (such as an accountable care organization and a vendor network) within a region or state, private/proprietary HIEs which concentrate on a single community or network (such as hospitals and integrated delivery system networks), payer-based HIEs, and disease-specific HIEs. Some vendors have even established an HIE network for their clients across the U.S. 

How is the HIE used? What information can I expect to find inside an HIE?

Conceived as a solution to ONC’s interoperability mandate, the HIE was designed to be a centralized resource for the secure exchange of clinical data with a state or region. HIEs operate as a conduit where siloed medical information can flow through. For instance, if a patient is seen in the emergency department, through a mix of ‘push’ and ‘pull’ information exchange, their primary care provider would be electronically informed of the reason for that visit, any interventions performed and diagnoses received. Historically in the above scenario, these two separate provider functions would remain isolated with one never being aware of the other - requiring the patient to self-report complex medical and procedural information. As could be imagined - relying on the patient as the primary source of information increases the risk of unnecessary/redundant testing, missed diagnoses and the general omission of other critical pieces of potentially life-altering information. 

Leveraging one of several architectural frameworks, HIEs enable the secure exchange of medical information across the entire care continuum. This is done in several ways, resulting in high variability state to state and HIE to HIE. At a high (and simplified) level, the HIE generally describes the “pipes” connecting an instance of an EHR to a centralized directory and matching system that links all patient records within the HIE network in a state or region. These pipes act as distribution channels for packets of medical information, and in most instances these packets can contain one (or many) types of clinical information continued within a Continuity of Care Document (CCD).

The CCD is the most frequently used term to describe electronic clinical summary documentation, although you may also hear terms like Continuity of Care Document or Summary of Care Document, all which generally describe the same basic document type. The CCD is generated by the EHR and transmitted by the HIE to connected external systems. It’s important to keep in mind that the CCD is structured to contain the most critical patient information to support transitions of care. Therefore we typically expect to see these data elements within: 

  • Demographics 

  • Prescribed medications 

  • Allergies 

  • Encounters

  • Procedures

  • Problem lists

  • Diagnoses

  • Laboratory results

  • Immunizations

  • Health risk factors

Note: for an EHR to be certified meaningful use stage 1, at minimum they must be able to generate and send a CCD that contains the patient’s problems list, prescribed medications, and lab results.

When thinking about accessing the HIE for potential use cases within your organization, it’s critical to keep the aforementioned historical context in mind. Because ONC was intentional in assuring that the HIE be able to accommodate geographical diversity, HIE governance, architecture, and policy were left to the discretion of individual states and regions. 

So when you’ve seen one HIE, you’ve seen one HIE.

Operational and technical variance causes a lack of ubiquity among HIE structure, data availability, data depth, and implementations

Due in part to the necessary discretion handed down to states and regions by the ONC, one of the defining characteristics of the national HIE landscape is variability. Both technically and operationally, every state and region has a unique solution to facilitating the exchange of medical information securely. 

Broadly, we can categorize the varying operational structures as: 

  1. The rapid expansion of facilitated information exchange to achieve stage 1 meaningful use 

  2. The development or expansion of independent nonprofit substate exchanges (leading to multiple HIEs within a given state) 

  3. Substate exchange expansion supported by a second-tier statewide network

We can segment the technical diversity of the HIE into 3 broad approaches deployed by HIE across the country:

  1. Federated model where the HIE functions as “the pipes” or conduit” for health information to be queried and delivered across a community

  2. Centralized model where the HIE roughly functions as a centralized aggregator of health data within a geographical area

  3. Blended model where the HIE is partially federated with specific centralized resources

Although HL7, the healthcare data standards organization, has continued to evolve standard definition for the interoperation of health data, this HIE variance can be troublesome depending on the use case due to inconsistencies in how data is stored and made available across each individual HIE implementation. 

HL7 standards articulate both the form and content of information being shared. For example, HL7 Version 2 (PDF) has become the most widely adopted messaging standard across the nation, alongside increasing adoption of Clinical Document Architecture (CDA) and Fast Health Interoperability Resources (FHIR). Because these standards also have high variability, this further contributes to data type and standard variability within HIEs due to inconsistency in how each data standard is implemented. 

*Note: FHIR is widely hailed as one of the most promising developments in interoperability. Many pundits and health tech organizations are betting heavily on broad and uniform adoption of FHIR standards over the coming years.

Further complicating HIE variability are federal meaningful use standards which dictate that EHR vendors must facilitate integrations with the HIE to be certified compliant for meaningful use. Initial adoption and compliance to meaningful use were variable amongst EHR vendors, with some companies even viewing this interoperation as a threat to their business model. Additionally, while meaningful use articulated the standards by which data be exchanged, limited quality control both technically (on the part of the EHR vendor) and operationally (by the provider themselves) have caused deep data integrity issues and lack of ubiquity across HIEs.  

What to keep in mind when considering connecting to HIEs

Despite the variance in HIE implementations due to operational, technical, and governance differences, there is without doubt massive value being generated by the HIE. In the context of healthcare delivery, no solutions to the disparate and siloed healthcare technology landscape have shown as much potential for resolution of data inefficiencies as have the HIE. Many technologies that have emerged over the last few years appear primed to build on the foundation set by the HIE to accelerate interoperability and drive advancements in access to quality health data. But although new solutions are beginning to mature, for the time being there remain significant barriers to widespread adoption and use of HIEs, especially for non-healthcare organizations.

Geographic, technical, and data quality variance represent big barriers to accessing HIEs in a uniform and efficient way across disparate regions. Any organization with a national footprint will invariably come across these challenges as they try to access HIEs for enterprise use cases. Navigating the dynamics region by region quickly becomes prohibitive to fully utilizing the HIE at scale since the variability of standards and data resources requires nuanced configuration of systems and processes at the state, and in many instances the substate level. This friction only increases as organizations attempt to connect with more HIEs across the nation. For example, for life insurance companies that want HIE access to accelerate underwriting for consumers, the high variability makes it an inadequate solution for accessing medical data at scale. The HIE ultimately can provide value as a subset of a larger data aggregation strategy, but likely won’t serve as a unified solution for all data needs. Connecting data from other sources such as directly from the EHR or patient portals enables a more holistic and comprehensive data access strategy that can power enterprise use cases. 

Consider using an aggregator platform rather than connecting to fragmented HIEs and health data sources

HIEs alone aren't enough to power large digital transformation initiatives or use cases requiring broad data network coverage. Companies with a national patient or consumer footprint should consider bypassing individual connections with localized HIEs and integrate with an aggregator platform that includes access to HIEs and other health data sources such as patient portals, EHR networks, and traditional attending physician statement (APS) vendors. 

The vision behind Human API is to radically accelerate the pace of innovation by enabling comprehensive access to fragmented health data. To achieve our vision of providing ubiquitous health data access, we’ve built our platform to function as a modern transaction layer that maximizes data coverage and useability for companies and consumers alike. HIEs remain a critical component of our data strategy as we continuously grow our coverage to improve network conversions. We’re also gathering insights about the performance of health data sources across our entire network to optimize the best retrieval path for use cases such as insurance underwriting, and have evolved our solution into a Health Intelligence Platform that converts health data into actionable intelligence for enterprises everywhere. If you’re considering connecting to HIEs or need access to health data to better serve your customers, I encourage you to evaluate Human API for yourself.  

Learn more about Human API’s health data network here or get in touch with a platform expert from our team. We’d love to hear about your use case.  

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