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31.03.2025

Key Challenges in Building HIE: Insights from Real Projects

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Stanislav Ostrovskiy

Partner, Business Development at Edenlab

About 30% of the data generated worldwide is healthcare data, including clinical data, administrative records, imagining results, genetic information, and even personal health metrics collected through wearable devices. The complexity of healthcare information lies in its heterogeneous nature, as well as different levels of sensitivity and the regulatory requirements that need to be followed for its management. 

To deliver high-quality care, this incomprehensible volume of data needs to be seamlessly and securely exchanged across different systems and institutions. This process allows clinicians, care teams, and patients to get a more complete view of the patient’s medical history. 

Healthcare Information Exchange (HIE) facilitates the sharing of patient data, solving the long-standing interoperability problem in healthcare—data fragmentation across disparate EHRs and systems. However, due to the sensitive character of healthcare data, a fragmented network of outdated systems, differing data standards, and inconsistent implementation of interoperability frameworks, HIEs encounter considerable obstacles in attaining smooth, scalable, and dependable data exchange of health information among various healthcare entities.

In this article, we’ll explain the nature of HIEs and examine the challenges of a health information exchange that need to be addressed when building healthcare information exchange systems.

Types of Healthcare Information

data in healthcare information exchange

Clinical information encompasses patient records, diagnoses, therapies, and progress notes, constituting the foundation of direct patient care. Imaging information, such as X-rays, MRIs, and CT scans, provides additional diagnostic detail yet requires significant storage and effective retrieval systems.

Records related to administration and finance, including insurance claims, billing information, and appointment scheduling, aid the operational functions of healthcare. Genomic and personalized medicine information offer customized treatment methods but require specialized infrastructure for safe storage and analysis. 

Moreover, data from wearable and smart medical devices used at home has broadened the range of healthcare information, allowing for proactive care and creating issues concerning standardization and integration.

The Need for Healthcare Information Exchange

healthcare data sources

Healthcare data originates from a vast and diverse set of sources, each contributing crucial insights into patient health. Data generation is continuous, from medical equipment to personal health tracking, creating a complex ecosystem that requires seamless integration.

Coordinated and effective patient care relies on the smooth transfer of healthcare data. Medical mistakes, unnecessary testing, and inefficiency are all results of a healthcare system that is not cohesive and where data is kept in separate databases at different facilities and by different doctors. By facilitating interoperability, HIE guarantees continuity of care by letting various systems communicate, share, and understand patient information.

Data interchange powers public health programs, studies, legislation and individual patient treatment. Disease trends, epidemic surveillance, and evidence-based intervention development can all benefit from aggregated and anonymized health data. Additionally, to customize treatment plans according to individual clinical and genetic profiles, seamless data sharing is essential, especially with the advent of personalized medicine and the future of health information exchange.

Challenges of a Health Information Exchange

The promise of seamless healthcare information exchange is immense, but achieving it is far from straightforward. While modern technology has made the movement of data faster and more efficient, the healthcare industry faces unique challenges in health information exchange that make true interoperability a complex goal. The difficulties range from technical barriers in health information exchange and regulatory barriers to health information exchange to operational and competitive concerns.

Scattered landscape of data formats

A significant challenge is the fragmented array of data formats. In contrast to sectors with established digital communication standards, healthcare data is found across various formats. Various healthcare organizations implement distinct EHR systems, laboratory information management systems (LIMS), and imaging technologies, each depending on its unique data structures and communication protocols. Some hospitals may still utilize older HL7 V2 messages, while others have moved forward to FHIR (Read more about “What Is FHIR?” in our article.). Radiology and imaging departments commonly utilize DICOM (Digital Imaging and Communications in Medicine), a format tailored for high-resolution medical scans, though it is not intended to exchange structured clinical data.

Data fragmentation

Even within a single healthcare organization, there can be fragmentation. A hospital’s cardiology division might implement one system, whereas the oncology division utilizes a different one. When a patient transitions between specialties or changes providers, critical information may not be communicated effectively or at all, resulting in unnecessary tests, fragmented histories, and possible medical mistakes. The absence of a widely accepted data standard remains a significant barrier to health information exchange and achieving a fully integrated healthcare ecosystem.

Information generation speed

A further obstacle emerges from the varying rates at which healthcare data is generated and shared. Not all medical information is generated at the same pace, nor must it be communicated immediately. Information such as immediate readings from a patient’s wearable heart monitor, needs to be transmitted without delay to identify irregularities and initiate notifications. Conversely, pathology reports or genetic test results can require several days to process before they are accessible.

This inconsistency can lead to problems of health information exchange. A physician can obtain a patient’s most recent blood pressure readings immediately yet may experience a delay of a day or more for a comprehensive diagnostic report. This delay can hinder essential decision-making, especially in urgent situations like stroke management, where every moment is crucial. Moreover, the non-simultaneous nature of healthcare data exchange creates challenges in health information exchange for system integration.

Security and patient data privacy

Healthcare data is regarded as one of the most sensitive types of personal information, given that it contains details on medical conditions, treatment plans, and genetic predispositions. Thus, security is a top priority and a legal and ethical necessity. If such data is compromised, it can lead to identity theft, insurance fraud, or even blackmail, elevating privacy concerns in health information exchange to the forefront.

Cyberattacks on healthcare facilities and ransomware attacks targeted at research labs, hospitals, and clinics have increased recently. 

“In the United States, attacks rose 128 percent between those two years. The outages that result from these attacks can have severe, long-lasting effects on health systems and patients. Globally, healthcare provider organizations incur the highest cost for data breaches of any industry, averaging $9.8 million per incident—more than 1.5 times the financial services industry’s $6.1 million, according to IBM’s Cost of a data breach report 2024.”

These attacks compromise patient privacy and may cause major disruptions to important services, delaying treatments and sometimes even closing operations of institutions. Apart from cyber dangers, inappropriate treatment of patient records, inadvertent data leaks, and insider mishandling of data also exist.

Healthcare organizations must have strict security measures like data encryption, multi-factor authentication, and access controls to help reduce these risks. The security steps must be carefully balanced, ensuring security while maintaining accessibility. Strict security measures might impede an efficient information flow, making it challenging for nurses and physicians to get the data they want when it is most needed. The challenge, therefore, is to design a security framework that safeguards patient data without slowing down medical care.

Patient data use consent

Aside from security, patient consent is another major obstacle in HIE. The patient has the right to control who has access to their medical records as the data is theirs. Unfortunately, patient permission is notoriously difficult to obtain, manage, and enforce due to the legal complexities involved. Regional legislation regarding permission varies, with some requiring patients to actively agree to data sharing (an opt-in model) and others assuming consent unless expressly rejected (an opt-out model).

Also, many patients sign medical paperwork without fully understanding what they’re agreeing to, which can cause misunderstandings and even lawsuits. Patients may consent to a specialist accessing their information without realizing that this also grants access to research organizations and third-party analytics companies. Patients also have the option of selectively sharing information, such that only their primary care provider has access to their whole medical record, but no one else can see their reproductive or mental health information.

It is technically and administratively difficult to manage these different consent choices. Healthcare systems should implement strong consent management frameworks that provide patients fine-grained control over their data to comply with regulations such as HIPAA in the U.S. and GDPR in Europe. To do this, we need advanced methods of managing identities, authenticating users, and keeping track of data access for complete transparency.

Competition within the healthcare information exchange market

Finally, one has to consider competition. HIE raises competitive issues among healthcare providers, insurance companies, and technology businesses, even when its main goal is enhancing patient care. Modern healthcare benefits much from data, yet companies are sometimes reluctant to provide it openly. A hospital investing extensively in an advanced patient data system could be reluctant to interact with a competitor’s network out of concern that a seamless exchange of information will inspire patients to move providers. Likewise, private healthcare companies might be worried that providing data to public institutions will erode their competitiveness.

Furthermore, technology vendors that create EHR systems, data integration platforms, and analytics tools frequently possess proprietary interests. Healthcare organizations encounter HIE integration issues when attempting to transfer data to competing platforms due to the establishment of confined ecosystems by certain vendors. The vendor benefits from this lack of interoperability, but it undermines the overarching objective of establishing a unified healthcare information exchange system.

Different Ways of Healthcare Information Exchange

There are two common healthcare information exchange approaches: internal and external. In the internal exchange model, data sharing happens within a single healthcare organization or multiple facilities owned or managed by the same organization. Being more straightforward, it allows organizations to manage control over data policies, standards, and implementation strategies. However, it has its downsides, which we will examine below.

Internal Exchange within One Facility

When the exchange of health information occurs within a single facility, such as a hospital, clinic, or specialized medical center, it benefits from a relatively controlled environment. The organization directly oversees its systems, policies, and security measures. As all data comes from and is consumed inside the same institution, HIE interoperability issues are minimized if all departments use a standardized system or compatible platform.

A hospital with a centralized electronic health record system, for example, may guarantee that all authorized staff members have easy access to data from the emergency department, radiology, laboratory, and inpatient wards. Lowering delays in gathering lab findings, imaging reports, or patient history increases efficiency. Faster, better-informed decisions made by doctors help to provide better patient outcomes.

Internal Exchange Across Multiple Facilities

When data is distributed among several institutions inside the same healthcare system (this might comprise a network of hospitals, outpatient clinics, rehabilitative facilities, and specialist care providers), internal HIE takes a broader scale under the same ownership or association.

Though more expansive, the benefits of this concept reflect those of single-facility exchange. The organization retains full control over its data exchange policies, ensuring all facilities operate within a unified framework. This process allows for greater interoperability standardization, as the organization can enforce using common EHR systems, communication protocols, and security measures.

Pros and Cons of Internal Exchange

The pros of internal healthcare information exchange – whether within a single facility or across multiple facilities – are numerous:

AspectDescription
ProPolicy control: The organization defines and enforces its own data governance and security policies, eliminating external compliance constraints.
ProTime efficiency: Data is exchanged in real-time without reliance on external networks, reducing delays in care delivery.
ProInteroperability within the network: A unified HIE infrastructure ensures smooth communication between departments and facilities.
ProImproved patient outcomes: Seamless access to comprehensive patient records enhances diagnosis, treatment planning, and care coordination.
ProCost savings: Avoids third-party integration fees and external compliance costs.
ConRegulatory compliance challenges: Even within an internal system, organizations must comply with national and international laws governing patient privacy and data protection.
ConLimited scope: Internal HIE does not address interoperability with external healthcare providers, which can be problematic for patients receiving care outside the network.
ConScalability concerns: Integrating newly acquired facilities or legacy systems can be complex and expensive.

External Healthcare Information Exchange

The internal HIE method fails to fix the bigger problem of scattered patient data throughout the healthcare digital landscape. This HIE model focuses on improving data interchange inside a single organization or a network of affiliated institutions. It is common for patients to see several healthcare professionals, including those at hospitals, private clinics, imaging facilities, specialists, and pharmacies, introducing barriers to health information exchange.

To increase coordination and eliminate data silos, external HIE must be in place to ensure data accompanies the patient wherever they seek care. However, there are a lot of technological, legal, and operational hurdles associated with this approach.

There are multiple forms of external HIE, the most common of which are one-to-many, many-to-many, and one-to-one exchanges. Level of connection, availability of technology infrastructure, and governance structure managing data sharing are the determining factors in the choice of approach.

One-to-one Exchange

The most basic form of external HIE is the one-to-one exchange, where two independent healthcare entities establish a direct data-sharing connection. This process could be a hospital exchanging patient records with a specialist clinic, a primary care provider sending lab orders to a diagnostic center, or an urgent care facility retrieving a patient’s history from their regular doctor.

One-to-one exchange offers a controlled and secure way to share data between specific partners. Since only two entities are involved, agreements on data governance, interoperability, and security protocols can be tailored to their needs. This model allows for focused collaboration without the complexities of integrating with a broader network.

However, one-to-one exchange does not scale well. A hospital may have hundreds of different providers with which it needs to exchange data, so setting up individual connections with each one becomes inefficient and expensive. Additionally, if patients see multiple specialists across different networks, their data remains fragmented, requiring manual retrieval from various sources.

One-to-many Exchange

A more efficient model is the one-to-many exchange, where a central entity, such as a regional health information organization, a government agency, or a large hospital system, acts as a hub for multiple providers. Instead of setting up direct connections with each partner, organizations connect to the central hub, facilitating data exchange between all participants.

This model significantly improves efficiency and scalability. A primary care physician connected to a one-to-many HIE network can access patient records from multiple hospitals, labs, and specialists without separate integrations. Patients benefit from more comprehensive, real-time access to their health data across different care settings, improving coordination and reducing unnecessary tests and treatments.

However, the effectiveness of one-to-many exchange depends on participation rates. If only some providers connect to the network while others remain outside, gaps in patient data persist.

Many-to-many Exchange

The most ambitious form of external HIE is the many-to-many exchange, where multiple independent entities collaborate in a fully interoperable network. This model envisions an ecosystem where any provider can seamlessly exchange patient data with any other provider, regardless of their EHR system or institutional affiliation.

Many-to-many HIE is the ultimate goal of healthcare interoperability and represents the future of health information exchange. It ensures that patient records are universally accessible, allowing seamless transitions between providers, facilities, and even across state or national borders. Large-scale networks, such as national health information exchanges or international health data-sharing initiatives, operate under this model.

However, this approach faces significant technical, regulatory, and competitive challenges. Unlike controlled internal exchanges or smaller external networks, many-to-many exchanges require strict standardization of protocols, strong security measures, and well-defined governance structures to ensure trust among participants. Data ownership and access rights become contentious issues, as healthcare providers may be reluctant to share data freely due to competitive concerns.

Additionally, achieving full interoperability across diverse systems remains a major obstacle. Some healthcare providers still use legacy systems incompatible with modern HIE frameworks, requiring costly integrations and ongoing technical support. The industry must address these HIE compliance challenges to achieve truly seamless data exchange across the healthcare ecosystem.

Pros and Cons of External Exchange

The pros of external healthcare information exchange – whether through one-to-one, one-to-many, or many-to-many models-are significant:

AspectDescription
ProImproved patient outcomes: Providers gain access to complete patient histories across multiple healthcare organizations, leading to better-informed clinical decisions, reduced errors, and more effective treatments.
ProSeamless transitions of care: Patients moving between primary care, specialists, emergency rooms, or long-term care facilities benefit from uninterrupted access to their medical records, preventing gaps in treatment.
ProReduced redundant testing and procedures: When providers can access prior lab results, imaging studies, and diagnoses, they can avoid unnecessary duplication, reducing costs and improving efficiency.
ProBetter coordination across healthcare ecosystems: Multi-organization exchange enables smoother collaboration between hospitals, clinics, labs, pharmacies, and insurers, streamlining administrative workflows and patient management.
ProEnhanced public health monitoring: Large-scale external HIE supports disease surveillance, population health analytics, and research by aggregating anonymized data from multiple sources.
ConRegulatory complexities: Unlike internal exchange, external HIE must comply with multiple laws and regulations, such as HIPAA, GDPR, and state-specific policies, which can introduce legal and administrative burdens.
ConMultiple policies to navigate: Each participating organization may have different governance frameworks, patient consent models, and security requirements, complicating standardization efforts.
ConTime-consuming implementation: Establishing secure, interoperable connections between multiple independent healthcare entities requires extensive planning, stakeholder collaboration, and ongoing maintenance.
ConInteroperability struggles: Many providers use different EHR systems, legacy software, or proprietary data formats that do not communicate seamlessly, requiring costly integration efforts.
ConHigh costs: External HIE requires investment in infrastructure, compliance, cybersecurity, and Interoperability solutions, which can be financially burdensome for smaller organizations.
ConCompetitive barriers: Some healthcare organizations and vendors resist data sharing due to concerns over losing patients, market advantage, or proprietary control over their systems.

How Edenlab Can Help: More Solutions to Succeed with HIE

Implementing smooth healthcare data sharing requires scalable infrastructure, strong interoperability solutions, and industry-standard compliance. Edenlab specializes in developing high-performance healthcare IT solutions that ensure the secure integration of real-time data across various healthcare systems.

Establishing Connectors for Seamless Integration

Often segregated across several systems, healthcare data exists in several forms and under several protocols. Our solutions provide an accurate and safe exchange of information between EHRs, laboratories, pharmacies, and insurers, whether via data pipelines, change data capture, or API-based connections.

Centralized Data Storage Clinical Repertory

A clinical data repository serves as a unified hub for storing patient data, enabling instant access for authorized providers. Edenlab builds scalable, high-performance repositories that support FHIR standard, ensuring interoperability while maintaining security and compliance. 

An example of our expertise is the development of the National Clinical Data Repository, where we designed and implemented a centralized system for managing patient records on a national scale. Leveraging the FHIR standard, we delivered a robust solution capable of supporting millions of records while ensuring seamless integration with other healthcare IT systems. Our solution has enhanced data accessibility, improved clinical decision-making, and ensured compliance with stringent regulatory frameworks.

Custom Solutions for Complex Healthcare Challenges

Beyond conventional integration and storage options, Edenlab offers custom healthcare solutions to address unique challenges, including:

  • Performance optimization for high-load environments in HIEs.
  • Custom analytics solutions.

FAQs

What is the typical cost range for a Health Information Exchange implementation? 

The implementation cost of an HIE varies widely depending on factors such as scale (regional, state, or national), architecture (centralized, federated, or hybrid), interoperability goals, and compliance requirements.

Key cost drivers include:

  • Number of participants (hospitals, clinics, labs, etc.).
  • Level of interoperability and standards (e.g., HL7 v2, CDA, FHIR).
  • Security and compliance needs (HIPAA, GDPR).
  • Customization and legacy system integration requirements.

What is the most common HIE architecture? 

In general, the most common integration pattern for HIEs is the one-for-all model, also known as the centralized hub-and-spoke approach. This is where every healthcare organization — hospitals, clinics, labs, public health agencies — connects to a single, central hub. That hub acts as the traffic controller for all data exchange.

It’s popular because it simplifies the whole integration process. Instead of each participant building dozens of direct connections to every other participant (like in a many-to-many model), they just connect once — to the hub — and the hub takes care of routing information to the right destination.

How do you integrate existing healthcare systems with HIE platforms? 

To integrate existing healthcare systems with an HIE, we assess each system’s capabilities—whether they use FHIR APIs, HL7 v2, or proprietary formats. Modern systems connect via FHIR REST APIs, while legacy systems often require an interface engine (like Mirth Connect) to translate data into standardized formats.

You can also implement secure communication channels (mutual TLS, OAuth2), integrate with a Master Patient Index for patient matching, and ensure consent management is enforced. Finally, thorough testing ensures workflows like document exchange, patient queries, and lab result sharing work seamlessly across the network.

What is the largest health information exchange?

The largest health information exchange is the eHealth Exchange in the United States. It is the nation’s biggest public-private HIE network, connecting over 75% of U.S. hospitals, thousands of clinics, federal agencies like the Department of Veterans Affairs (VA) and the Department of Defense (DoD), as well as regional and state-level HIEs.

It facilitates the exchange of billions of clinical records annually, supporting nationwide interoperability and secure data sharing across federal and private healthcare organizations. The eHealth Exchange is foundational in enabling large-scale health data exchange across the U.S. healthcare ecosystem.

Written by

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Stanislav Ostrovskiy

Partner, Business Development at Edenlab

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