Building an interoperable Health Information Exchange

Building an interoperable Health Information Exchange
The federal government declared in the American Recovery and Reinvestment Act (ARRA) of 2009 [1] its intent to fund significant investments necessary to built an interconnected health information exchange (HIE) in the U.S., with the goal of quality improvement and cost containment [7]. In recent years there have been many attempts to built regional HIE, often called RHIOs, but most of these RHIOs failed after they exhausted their initial government funding [2]. Reasons for RHIO failure were both economic, with unsound business plans and monetization models [6], and technical. Learning from the failures of the last decade, a successful approach must provide both a sound financial model for all participating parties, and incorporate proven components into a scalable, secure, extensible and standards oriented architecture. This essay describes at a high level some of the critical components required for building an interoperable HIE.
HIE exchanges allow health data exchanges between various organizations and thus different information systems. Given the sensitive nature of health care information, data privacy has to be maintained throughout such a federated information system in compliance with HIPAA , requires an auditable log of every passive or active data access. In order to fulfill both the regulatory and functional requirements, the following core elements are required:

– Communication adapters that allow data extraction from existing legacy applications such as Electronic Medical Record systems (Providers) or Claims Data Repositories (Payers), usually implemented in a service oriented architecture (SOA). This is achieved by tagging data elements in feeder systems against a common data standard. A template for a common data architecture is HL7 CDA2 [4]. ANSI developed with HITSP specific work flow profiles for common tasks in the provider environment [3]. Complexity of peer-to-peer communication and the requirement of interfaces would grow  , in which n represents the number of information systems connected to a HIE. In the approach to map against a common data template, the interface requirement is reduced to n, a significant reduction in complexity. If the HIE is implemented in multiple loci, interfaces can be re-used, further reducing complexity. Nevertheless, given that most current EMR implementations are proprietary and do not adhere to a standardized architecture, tagging data elements in proprietary architectures does represent a substantial technical and financial challenge in the creation of HIE.

– Master Data Management (MDM) systems that allow identification of unique person profiles across multiple information systems, even in the absence of a single, unique identifier. While some countries do have such identifiers, in the U.S. the use of the social security number is not permitted. However, identifying data belonging to the same person across multiple systems is absolutely crucial for both patient safety and cost containment purposes. Popular systems like Initiate or Quadramed are proprietary in nature and create vendor dependency. With Mural, there is a generic, open source technology available, which is however lacking healthcare specific adapters. However, since communication adapters are essential for the entire system, as discussed earlier, adapters could be used to extract person identifying information and utilize the interpolation capability of the Mural project.

– Record Locator Services track data sources for medical information. The combination of MDM and SOA allows extraction of data related to a specific person from their original record keeping system on demand, when required (ad hoc). In the proposed interoperable HIE the record locator service is implemented in a distributed fashion, thus eliminating single point of failure. Synchronization of the various, distributed record locator services would follow a propagation scheme analogous to Network Routers, which keep routing tables locally without a single point of failure.

– Repositories create data artifacts that are accessible outside of the original record keeping system. This approach is used to create a persistent subset of medical information with emergency information, such as allergies and medications. If the data is constantly updated by trusted sources, it can be used for medical purposes. If it is exclusively or substantially maintained by user input, it is only a consumer directed personal health record (PHR) without clinical application. An interoperable HIE should not contain a repository of all healthcare data, as such an approach would create significant, inherent scalability issues. Every data artifact would have to be constantly checked for accuracy, generating unnecessary information traffic. However, emergency subsets and medical images could and should be kept in a repository in order to achieve high service availability levels with fast response times, while more detailed data is exclusively kept in the original custodial system of record.

– Role management is used to define across the organizations connected in a HIE roles that are associated with data access rights, i.e. which types and to which extend data can be requested by authorized HIE users.  This is an important regulatory requirement, but also a helpful feature to streamline clinical workflow.

– Identity Management (IdM) is used in organizations to create auditable and traceable identities of system users that have certain rights to access or create/update information. It includes access management and single sign on, but also identity provisioning. While each organization within an HIE might have their own IdM solution, those individual solutions have to be federated in order to allow HIE wide access and provisioning. Federated systems create a circle of trust, in which access right and roles migrate with the access request across organizations. Besides the technical implementation of an IdM federation, it also requires audit logging and role definition across the participating organizations.

– Consent management as an extension to access management specific to healthcare privacy concerns. While normally access and role based access to information is sufficient, a specific consent management extension implements patient rights to restrict data access further, while propagating and tracking consented access. The new, extended privacy requirements of HIPAA expressed in ARRA2009 could make consent management mandatory.

– Clinical applications, such as Laboratory Data viewers, consolidated DICOM viewers, Medication records, and Clinical decision support systems. While all the aforementioned modules and systems are enablers of a HIE, the clinical applications are the return on investment. From a cost containment point of view, avoidance of redundant procedures is the direct measurable component. Provided that imaging procedures, for example, are a very rapidly growing cost factor in health care [5], access to recent imaging can both reduce cost and improve decision making. The same is true for laboratory test, albeit the per-procedure savings is smaller by an order of magnitude. Cost savings caused by redundancy avoidance is a major factor in Walker et al.’s value calculation [8]. Indirect cost savings are achieved by access to medication records, which can unveil medication compliance and avoid undesired drug-drug interactions. In recent implementations extending information to citizens also has become a desired feature, be it for prevention or disease management purposes.

It is important to note that working applications for all modules exist, eliminating the need for costly and risky development. However, significant integration effort is required to combine all functional elements to a seamlessly working, secure and scalable information system.

In conclusion, the experience of building RHIOs and HIE over the past decade has demonstrated the risks and challenges of a complex health data exchange, but it has also yielded components and experience that make it today substantially easier to architect working HIE. While the technical problem therefore seems manageable, the core issues of existing RHIOs remain financial viability and access to vast amounts of data that are not currently captured electronically. In recent years, payers have begun to address this gap by mining claims data for longitudinal medication and diagnoses information, which is further evidence that both commercial and public payers (such as Medicaid) should be critical stakeholders in any HIE project.
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1.    111th Congress of the United States of America. American Recovery and Reinvestment Act of 2009 (ARRA), 2009.
2.    Adler-Milstein, J. and Jha, A. Fledgling firms offer hope on health costs. Harvard Business Review, 86 (3). 26.
3.    American National Standards Institute (ANSI). HITSP – enabling healthcare interoperability. ANSI ed., 2009.
4.    Dolin, R., Alschuler, I., Boyer, S., Beebe, C., Behlen, F., Biron, P. and Shvo, A.S. HL7 clinical document architecture, release 2. Journal of the American Medical Informatics Association, 13 (1). 30.
5.    Levin, D.C. and Rao, V.M. Turf wars in radiology: the overutilization of imaging resulting from self-referral. Journal of the American College of Radiology, 1 (3). 169-172.
6.    Miller, R.H. and Miller, B.S. The Santa Barbara county care data exchange: Lessons learned iHealth reports, California Health Care Foundation, 2007.
7.    Walker, J., Pan, E., Johnston, D., Adler-Milstein, J., Bates, D.W. and Middleton, B. The value of health care information exchange and interoperability. Health Affairs.
8.    Walker, J., Pan, E., Johnston, D., Adler-Milstein, J. and et al. The Value Of Health Care Information Exchange And Interoperability. Health Affairs, 24. 10.