Defining health information exchange: scoping review of published definitions

Ather Akhlaq

Department of Health and Hospital Management, Institute of Business Management, Korangi Creek, Karachi, Pakistan

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, Medical School, University of Edinburgh, United Kingdom

Aziz Sheikh

Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, Medical School, University of Edinburgh, United Kingdom

Claudia Pagliari

Usher Institute of Population Health Sciences and Informatics, Medical School, University of Edinburgh, United Kingdom

Author address for correspondence

Dr. Ather Akhlaq

Assistant Professor of eHealth, Health and Hospital

Management, Institute of Business Management,

Korangi Creek, Karachi, Pakistan

Email: ather.akhlaq@iobm.edu.pk

Cite this article: Akhlaq A, Sheikh A, Pagliari C. Defining health information exchange: scoping review of published definitions. J Innov Health Inform. 2016;23(4):684–764.

Copyright © 2016 The Author(s). Published by BCS, The Chartered Institute for IT under Creative Commons license http://creativecommons.org/licenses/by/4.0/


ABSTRACT

Objective The term health information exchange (HIE) is often used in health informatics, yet uncertainties remain about its precise meaning. This scoping review aimed to capture and analyse existing definitions in order to map variations in the use of this term and the concepts associated with it.

Methods Systematic literature search to identify published definitions of HIE and related terms. Medline, Web of Science, Library Information Science and Technology Abstracts, EMBASE and CINAHL Plus were searched to identify relevant papers, and Google to identify grey literature. Searches were not limited by language or date of publication. Both explicit and equivalent conceptual definitions were included. Included definitions were summarised and thematically analysed in order to identify and map the underpinning constructs.

Results Our searches revealed 603 scientific articles and 5981 website links. From these, a total of 268 unique definitions of HIE were identified and extracted: 103 from scientific databases and 165 from Google. Eleven constructs emerged from the thematic analysis. Contextual factors influenced the emphasis of the definitions and the overall framing of HIE as an organisational entity that facilitates and or as a process of sharing health information between diverse stakeholders.

Conclusions HIE is a complex and evolving construct, for which multiple definitions exist. In order to encourage consensus, the authors propose this broad definition, which encompasses the key attributes of HIE described in the literature: “HIE is the electronic mobilisation of clinical and administrative information within or across organisations in a region or community and, potentially, internationally between various systems according to locally and/or nationally recognised standards while maintaining the authenticity and accuracy of the information being exchanged, enabling stakeholders to make informed decisions to enhance healthcare quality of a patient and population. HIEs are multi-stakeholder organisations that oversee the business, operational and legal issues involved in the exchange of information.”

Keywords: eHealth, health informatics, health information exchange, scoping review


INTRODUCTION

Effectively delivering integrated patient care and business transactions within the healthcare ecosystem requires the exchange of patient-related data between stakeholders within and across organisations, in order to support clinical decision making and organisational functions such an insurer reimbursement.1 The process of transferring or sharing this information using information and communications technologies is often referred to as electronic health information exchange (HIE).2,3

Much of the current narrative around HIE has been centred around the United States (US) policy context, arising from the Health Information Technology for Economic and Clinical Health (HITECH) Act. This aims to improve the efficiency, consistency, safety and equity of healthcare services through better information sharing between relevant stakeholders, contingent upon the ‘meaningful use’ of electronic health records (EHRs), and is backed by a programme of financial incentives and penalties to encourage change.4,5 These developments have drawn particular attention to HIE in the US, although the same activities are being undertaken internationally. The screenshot in Figure 1 shows the number of global Google searches, since 2004, for the specific term ‘HIE’ (lower line) and the topic more generally, which is computed from several indicators (upper line).

Much of the web traffic shown in Figure 1 is driven from the US and closely reflects the ‘meaningful use’ agenda, which has important but somewhat different implications for clinicians, healthcare delivery organisations, insurers and healthcare information technology providers. It also reflects the explicit use of the search term ‘HIE’, which is close-coupled with the US policy and business environment.

Although the term HIE is widely used, the way in which it is used varies in significant ways across stakeholders and contexts, including policymakers, academic institutions, professional organisations and funding bodies. Examples of diversity include ‘occupational’ HIE,4 HIE as a feature of the EHR5 and HIE as a corporate network of data warehouses serving a health organisation.6 This raises the potential for ambiguous or inconsistent definitions to hinder meaningful dialogue around health informatics policy, research and practice. For this reason, we decided to undertake a detailed scoping review in order to analyse the ways in which the term is being interpreted in the literature and how these vary across different organisations and contexts. The research therefore set out to answer the question “What is HIE?” with reference to the ways in which it has been defined and the concepts underpinning these definitions. The approach was inspired by earlier scoping reviews of eHealth7,8 and aimed to clarify the different uses of the term to in order aid the sharing of information about HIE across stakeholders and inform emerging taxonomies in health informatics.9,10


METHODS

Design

Systematic scoping review of the published and grey literature.11

Inclusion criteria

Definitions appearing in print or digital format were searched that explicitly refer to HIE or equivalent terms such as clinical information exchange and healthcare information exchange, as well as related concepts such as electronic data interchange (EDI). ‘Definition’ was taken to include explicit statements of the meaning of the term with reference to key concepts (e.g. ‘HIE is the movement of patient information across nodes of a health system using health information technologies and standards for data exchange’) and conceptual definitions, in the form of functional descriptions of HIE (e.g. ‘organisations exchange health information using middleware systems and interoperability standards such as HL7’).

Figure 1 Google searches for HIE as a search string and a topic, since 2005.
Source: Google Trends. Computed on 22 March 2015

Exclusion criteria

References to HIE not accompanied by either an explicit or an implied definition (as above) were excluded.

Search strategy

Searches were not limited by language. The searches covered the period from 1900 to February 2014.

Web searches: AA and CP first conducted a Google search using the narrative terms shown in Table 1.

Scientific databases

The explicit search terms and structured queries shown in Table 2 were used to interrogate Medline; Web of Science; Library Information Science and Technology Abstracts; EMBASE; and CINAHL Plus. There was no medical subject heading (MeSH) term available for HIE, clinical information exchange or healthcare information exchange and hence the reliance on key words.

Query strings were adapted as necessary for each academic database and for the purposes of Google searching. Titles, abstracts and text of the citations identified in the academic database were independently reviewed by two authors (AA and CP) before articles were retrieved for further analysis. Any disagreements between the investigators were resolved by a third reviewer (AS).

Reference lists of the included articles were also scrutinised for any relevant sources and cited work. Websites included reports, encyclopaedias, dictionaries, blogs, hospitals, vendors, letters, presentations, documents, white papers, articles and references. Duplicate citations and definitions were excluded from the results.

Table 1 Summary of Google searches

Data extraction

Data extraction tables were prepared to include details of the definition, author, source, year and country of origin. Duplicates appearing in more than one database were excluded prior to further analysis.

Analysis

As this was a scoping review of definitions, rather than a systematic review of research evidence, analysis did not involve appraisal of study quality.8,1214

All potentially relevant articles identified by the search were analysed by hand in order to determine whether they contained an explicit definition of the term or an equivalent conceptual definition. Definitions were descriptively analysed according to publication date, geographical origin, provenance, and terminology used. AA undertook a high-level pass through the data to create a draft coding framework, which was refined in consultation with CP before beginning the coding process.8,12 Definitions were then thematically analysed, with each definition coded according to its various qualitative attributes. The codes were iteratively adapted in order to achieve the best fit with the data, equivalent to qualitative research, where coding proceeds until the point of ‘saturation’ where no new codes were required to describe the data.

Table 2 Summary of academic database searches


RESULTS

The Google search yielded 5981 Web pages referring to the term HIE, whilst the searches of scientific databases revealed 603 articles referring to HIE (see Figure 2). These were analysed in order to determine whether they contained an explicit or conceptual definition.

Table 3 shows the number of definitions (see also Appendix A) extracted from Google and scientific databases.

Definitions dated back to the year 1957.15 Definitions ranged in length from 1116 to 146 words.17 Most of the definitions were from the US. See Table 4 for the number of definitions from various countries and regions. Other terms closely related to HIE found were ‘electronic data interchange’,1820 ‘clinical information exchange’,2126 ‘clinical document exchange’,27 ‘clinical HIE’,28,29 ‘healthcare information exchange’,3035 ‘medical data exchange’ 36 and ‘information exchange.’ 37


KEY THEMES IDENTIFIED

The objective of facilitating exchange of health information among different systems or stakeholders was represented in the majority of definitions (See Appendices A and B).

The analysis of the included definitions revealed 11 main conceptual themes. In Table 5, these are arranged according to their frequency in the corpus of included definitions, while Figure 3 represents them in terms of themes and sub-themes (not in the order of frequency). A more detailed breakdown of subthemes and their frequencies may be found in Appendix B.

Figure 2 PRISMA diagram of HIE scoping review

Table 3 The number of definitions retrieved and extracted

Table 4 The number of HIE definitions from different countries and regions

(Many definitions embedded a range of concepts and were thus tagged with more than one code or theme.)

The concepts represented within each higher order theme are described below.

Usage of data and information

The theme ‘data and information’ was divided into sub-categories that included ‘healthcare information’, ‘health records’, ‘claims and administrative’ and ‘demographic data.’

Health care information

Definitions referring to the types of information that could be shared, accessed or exchanged are given in Box 1.

Table 5 Themes evolved and the frequency of their occurrence

Health records

Healthcare information was categorised into various types of health records as given in Box 2.

Further, the contents of healthcare information and health records included are given in Box 3.

Figure 3 HIE themes

Claims and administrative data

Other health information involved claims and administrative data (see Box 4).

Demographic data

Demographic items such as name, date of birth, address and insurance of the patients were exchanged along with the clinical information.27,42,88,186,187

Information transfer as a function

Nearly, all the included definitions referred to health information are being exchanged through electronic processes. Words and expressions used to describe this process or its direction are given in Box 5.

Further, health information was being exchanged and transferred through different mediums and methods such as ‘e-transfer’,55 ‘application-level communication’,49 ‘email’195,210 and ‘secure messaging.’196

Stakeholders involved in HIE

The third theme related to the range of stakeholders engaged in HIE, as shown in Box 6:

Some descriptions of stakeholders were more general, as shown in Box 7:

Potential benefits of HIE

Many definitions emphasised the benefits and potential benefits of using HIE, although these were framed in different ways. The dominant benefit was being able to transfer information in a secure way (see Box 8). Other themes related to healthcare quality, timeliness, improved decision making and patient centredness.

Technology required for HIE

Almost all of the definitions referred to ‘electronic’ or ‘digital’ data exchange. Most referred to the information infrastructure, systems or technology platforms used to host, transfer or exchange these data. Other related terms included those in Box 9.

Focus/context of use

Different definitions also considered HIE with reference to its different contexts of use (see Box 10).

HIE was seen as an entity, organisation as well as a process as described below.

HIE as an entity or organisation

In many definitions, HIE was labelled as an ‘entity’60,70,73,74,77,83,143,227,283 that was established to exchange health information in a secure manner. It has also been prefixed as ‘legal entity’60 and ‘person or governmental entity.’227 In some definitions, HIEs were conceived as ‘organisations’186,284 or sets of organisational ‘services’ and infrastructures to support or streamline the exchange of health information.72,149,165,197,206,285,75,263,267,130 Other organisational concepts/terms used under this theme are given in Box 11).

HIE as a process

Here HIE was considered as the procedure involved in transferring electronic or digital health data in a protected environment among multi-stakeholders.68,81,145,178,180,200,223,224,235,261,283,284 Moreover, it was the process of utilising technology and systems to capture, store, share and retrieve the data electronically.35,48 In a few definitions, HIE was also reflected as a ‘verb’, an action, a process responsible for transmitting health information17,186,217,284 and collaboration among providers.21,32,94,117,171

Data standards

Incompatibility between systems and software has presented a barrier to HIE, and for this reason, the importance of interoperability standards is emphasised in the majority of definitions. Keywords and phrases related to this are given in Box 12.

Connectivity between different ‘locations’

Definitions falling within this theme emphasised the exchange of information among facilities or organisations located in different areas (see Box 13).

Public health outcomes

The uses of HIE in population health were stressed in a number of definitions.97,127,165,255,288 Relevant concepts covered the uses of HIE for supporting public and community health practices, population health monitoring and research (see Box 14).

Business solutions/objectives of HIE

A number of definitions conceived of HIE as either a commercial solution facilitating information exchange or in terms of its business objectives.289 It was suggested that HIE will come up with their viable business plans when stimulus funding from the government will end.290 See more examples of HIE business solutions/objectives are given in Box 15.

Sectoral or regional scope

Many definitions conceived HIE in terms of sectoral, geographic or occupational scope (see Box 16)


DISCUSSION

The analysis has revealed considerable variability among existing definitions of HIE and insights into the range of concepts that are embedded within these definitions.

Many definitions included not only the exchange of patient information but also other types of information such as demographics, claims and administrative data. Definitions also described health information sharing and connectivity at the level of organisations, states or regions and nations, possibly reflecting the different ways in which care is organised in different national contexts.

While the US government has provided incentives for the adoption of HIE, securing long-term funding is a major challenge for sustainability. Implementing HIE represents an investment and not simply a cost and this is accompanied by a realisation that policy makers must find approaches to assure that all stakeholders who benefit from HIE pay to support it and specifically that efforts should be made to engage private payers.293

A wide variety of stakeholders are engaged in HIE, not only including healthcare professionals and patients but also policy makers, researchers, and insurance companies, for example. Although infrastructural, economic, technical and cultural barriers have impeded the participation of some stakeholder groups in HIE efforts, it remains the core of the vision for a connected, coordinated and learning health system.294

Not surprisingly, the majority of definitions highlighted the importance of secure information exchange and many pointed to the requirement for common data standards necessary for the quality of data content, clinical documentation, data mapping and, most importantly, interoperability between disparate systems.201 Common standards will also ensure data protection, confidentiality, interoperability and privacy.29,129,189,228

The value of HIE for supporting public health is referred to in many of the definitions, with the ability to meaningfully move clinical data across disparate systems being seen as vital for effective health surveillance and management of care delivered outside health facilities.295

Strengths and limitations

This review aimed to identify, classify and map definitions of HIE and was not intended as an in-depth analysis of the challenges and opportunities presented by HIE, although such issues were inevitably reflected in many of the definitions. The search terms used to identify definitions of HIE were limited to those that we considered most relevant and it is possible that extending them to include other pertinent concepts in health informatics might have revealed further descriptions of HIE and HIE-like concepts. However, we have followed previous authors in prioritising the search for explicit definitions, as a means of generating insights into how the concepts has evolved and how it is being discussed.8,12 Using both research databases and a general web search engine gave us greater scope to reach both academic and non-academic literature. Internet searches were restricted to Google and while it is possible that additional definitions may have been found using other search engines, the very large number of hits produced by our queries suggests that it was an effective means of identifying the majority of relevant content in the online grey literature.

The included definitions reflect the dominance of the US literature pertaining to HIE and, to some extent, the language used to describe information sharing concepts in that national context. We acknowledge this limitation, interpreting it as a consequence of the major investment in HIE in the US over recent years, with its inevitable knock-on effects on the volume of literature emerging from that part of the world. As the term gains wider international currency and other countries prioritise investments in HIE, this national balance may change. Nevertheless, a post-hoc analysis excluding the US definitions revealed similar themes as found across our entire corpus of 268 definitions, which encompasses research pre-HIPPA, suggesting that that the concept and function of HIE is similar in different parts of the world and has consistencies over time (Table 6).

Table 6 Weightage of themes excluding US definitions

Implications for research, practice and policy

The definitions of HIE appearing in the literature vary on a number of philosophical and conceptual attributes, and many are context specific. The ways in which different authors choose to describe concepts is inevitably influenced by their backgrounds and vested interests and it is therefore not surprising to observe the differences in emphasis. However, we were struck by the clear alignment of the HIE concept with specific technologies or business opportunities in some definitions, where HIE is used describe a service, an organisation or a technology, rather than a process or concept. Such a language was often used by businesses promoting their products or in the context of state information systems, where ‘the exchange’ is pictured as an operational entity. This creates important obstacles to communication about HIE, particularly for policymakers involved in making decisions about strategy and procurements.

We have not found a single definition that encompasses all of the key attributes of HIE identified by our thematic ­analysis. The one suggested by Finn69 is one of the most comprehensive and differentiates ‘HIE’ as a concept related to the processes of data transfer and sharing, and ‘HIEs’ as ­entities responsible for overseeing effective HIE, while also ­recognising the ­benefits, scope and stakeholders involved.69 The broad ­concept of HIE also describes a set of enabling technologies that ­support these processes, including data standards ­and public health ­objectives. The use of HIE as a noun describing organisational entities concerned with mediation and governance of ­information transfers is largely, although not exclusively, a US phenomenon and also qualitatively different from ­process-oriented definitions. It has therefore has been placed in separate sentence. Based on our review, we proposed the following integrated definition of HIE shown in Box 17, which is a heavily adapted version of the one ­proposed by Finn.69

Figure 4 Proposed HIE definition composed of themes identified

While this definition may not be ideally suited to all contexts (such as HIE for specific diseases and/or community HIE), we believe it provides a good overall fit with the themes identified in the heterogeneous corpus of definitions revealed by our review and therefore propose it for possible wider adoption (see Figure 4).


CONCLUSIONS

This review has shed light on the different facets of HIE. In the spirit of promoting further scholarly discussion and debate, we have proposed a definition that encompasses the key underpinning constructs. We recommend that future authors consider the findings of this review before developing new definitions of HIE, in order to avoid adding further heterogeneity. We also hope the review has value for policymakers involved in planning, procurement and evaluation of HIE.

Funding

We would like to thank Higher Education Commission Pakistan and The University of Edinburgh for providing funds for this review.

Acknowledgement

We wish to record our appreciation to Professor Brian McKinstry and the anonymous reviewers for their comments on an earlier draft of this manuscript.


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Appendix A: Extracted Definitions


Appendix B: Recurrent topics of HIE

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