Defining health information exchange: scoping review of published definitions

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.”


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 EHR 5 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 eHealth 7,8 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

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

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.

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. 8,12- 14 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.

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', 18-20 'clinical information exchange', 21-26 'clinical document exchange', 27 'clinical HIE', 28,29 'healthcare information exchange', 30-35 '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 Google Hits (6 queries): 33,000,000 + 32,200,000 + 38,900,000 + 2,160,000 + 20,300,000 + 111,000,000 = 126560000 Results viewed: 1000 + 1000 + 997 + 991 + 993 + 1000 = 5981 (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.  (Unknown) n = 7

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.

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

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).

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 Finn 69 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

Box 17 Adapted and proposed HIE definition
'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.' 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). 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.

Abhyankar et al
Scientific 2010 US Some regional health information exchanges (HIEs) provide web-based delivery systems that accept lab results messages from many sources (e.g. hospital laboratory, stand-alone radiology services) and deliver them in a uniform format to physician offices.

Aspelin (75)
Web page / Post: Mark Aspelin, Health IT Manager / Writer Unknown US Health Information Exchange (HIE) is a term that is used to describe the sharing of health information electronically among two or more entities. The term is also used to describe an organization that provides services that enable the electronic sharing of health information. The concept of a health information exchange is a critical element of Meaningful Use, and the future of healthcare reform at the local, regional, and national level.
Scientific 2007 US Health information exchanges or regional health information organizations (HIEs or RHIOs) have emerged as vehicles to facilitate the flow of clinical information between providers in the community; they are building on the foundation laid by the pioneers in the field, the Indiana Health Information Exchange, the Inland Northwest Health System, HealthBridge and a few others. The primary business focus of these networks has sought to create value for the provider community by creating productive efficiencies. In doing so, they have been able to generate modest revenue, and therefore have achieved a modest but sustainable business model.

Delfan (5)
Master Thesis: Computer Science Delft University of Technology 2013 Netherla nds Health Information Exchange (HIE) is a term used to describe the sharing of health information electronically among two or more entities. These entities are mostly organizations, which provide health services to their clients (the patients) and also enable the sharing of electronic health information. The exchange of medical data takes place primarily between different medical departments within the same health organization. This happens most of the time through an Electronic Health Records (EHR) system within the organization, but also across the organizational borders on the regional level (through Regional Health Information Systems, RHIS) or across the country (National EHR).

US
In its most conservative definition, HIE (the verb) is the activity of secure health data exchange between two authorized and consenting trading partners. Data exchange occurs between any two trading parties-a data supplier and a data receiver. It can also be facilitated by one, two or more third parties who operate between the data supplier and the data receiver. To add complexity, a third party could also be storing data from and on behalf of the data supplier and be transmitting data on behalf of the data supplier (in such case, the third party would be considered to be the data supplier). Further, a third party could be receiving data on behalf of a data receiver. While this may be complex, HIE activity can enhance virtually any clinical function by virtue of providing a broader set of data upon which clinical decisions can be based. Unknow n Health information exchange (HIE) refers to the process of reliable and interoperable electronic health-related information sharing conducted in a manner that protects the confidentiality, privacy, and security of the information. Essential to this process is the capability to employ recognized standards as they are established incrementally, further enabling interoperability, security and confidentiality of the information as well as authorization of those who access the information.

HINAz (236)
119. ILHIE  The term "HIE," acronym for health information exchange, is being used interchangeably to define both the organization that is responsible for managing the exchange of the data (the noun) and the process by which the data can be exchanged (the verb).

KC (139)
Web page: Kane County Health Department Unknown US The Health Information Exchange (HIE) will allow local public health departments to be able to evaluate real-time health data on a population level, in order to monitor the health of our community, as well as to assure that we provide the highest quality service to our residents. In addition, we will be better able to respond to health issues in our community. 149. Loonsk (195) Web page: CGI, Initiative for Collaborative Government 2010 US HIE" is used to describe: hospitals sharing lab reports and discharge summaries with affiliated providers; multi-stakeholder Regional or State

Kern and Kaushal
Health Information Organizations (RHIOs, HIEs, HIOs); the exchange of information among the products of a single EMR vendor; the secure emailing of documents; and, perhaps most simply and broadly, the ability of any piece of software to exchange information. HIE can include information being browsed, "pulled" and/or "pushed," and information that is fully coded with nationally recognized vocabularies or information that is in barely processable document formats. HIE is a Process Health Info Exchange (HIE) refers back to the strategy of enabling the dependable sharing of digital patient care-associated data amongst health care associated entities and networks. This sharing is done in a way that protects the confidentiality, privacy and safety of the information. Central to this concept is the usage of nationally recognized standards currently in place and future ones as they are published.
HIEs can even provide key information to people to promote improved health and wellness, and can be used to assist research, public well-being, emergency response, and high quality improvement. Additionally, an HIE allows the sharing of health-related data amongst healthcare organizations and with individuals on a neighborhood, regional, and nationwide basis. Unknown US Health information exchange system is responsible for mobilizing the healthcare information electronically throughout the associated organizations that are bordered by community, hospital system and region. Health information exchange can endow us the ability to transfer clinical information electronically in between the network of health care (115)information systems and at the same time maintaining and securing the true meaning of the information being exchanged. It is the job of health information exchange system to provide the access to and retrieval of the medical data in order to facilitate effective, patient-centered, timely, safe, secured and equitable health care. The health information exchange system is also fruitful in terms of providing assistance to the Public Health authorities in the analyses of the countrywide population health. Unknown US Sometimes the term HIE is used as part of the name of a Regional Health Information Organization, or RHIO, defined in the same report as, "a health information organization that brings together health care stakeholders within a defined geographic area and governs health information exchange among them for the purpose of improving health care in that community." Here "HIE" mean the process of sharing information and "RHIO" mean the organization that facilitates the sharing.

Rebryna (45)
Scientific 2009 Canada Regional health information organizations (RHIOs) or health information exchanges (HIEs) vary in definition, but the overall concept rests on the exchange of health information across organizations.  The local and regional Health Information Exchanges (HIEs) should provide the technical, financial, privacy oversight and governance of all aspects of an electronic portal through which individual patients' health data can be transferred between and among authorized users, in accordance with agreedupon information exchange policies and standards, and subject to strict privacy and security protections. Users of an HIE can include patients, providers, public health officials, payers, and researchers.

Recogniti (169)
236. Smith  The creation of a statewide health information exchange will allow health information to be securely exchanged between providers within Texas. This will increase the coordination and quality of care while improving efficiency in the health care system and increasing consumer empowerment and control.
245. Thomas  The Clinical Health Information Exchange (cHIE) provides physicians a way to share and view patient information in a secure electronic manner. This information is accessible, with patient consent, to authorized users while maintaining the highest standards of patient privacy.
The goal of the cHIE is to improve the quality of care you receive by increasing efficiency and maintaining patient safety. This is accomplished by enabling healthcare professionals to be better informed, and by reducing time and expense associated with missing information and ordering of duplicate tests.

Voigt and
Torzewski (109) Scientific 2011 US Health information exchange (HIE) has long been touted as a silver bullet, streamlining patient transfers, reducing duplication, enlightening population health, and generally improving health outcomes. It promises to connect clinicians, empower patients, feed data repositories, and trigger decision support alerts from a community-wide set of patient records, among other things. Critical to these solutions is an HIE network that is broadly adopted within a patient community and a rich flow of discrete clinical information. Unknow n Health information exchange (HIE) is the mobilization of healthcare information electronically across organizations within a region, community or hospital system. HIE provides the capability to electronically move clinical information among disparate health care information systems while maintaining the meaning of the information being exchanged. The goal of HIE is to facilitate access to and retrieval of clinical data to provide safer and more timely, efficient, effective, and equitable patient-centered care. HIE is also useful to public health authorities to assist in analyses of the health of the population.

US
The goal of health information exchange is for information to follow patients, wherever and whenever they seek care, in a private and secure manner so that teams of doctors, nurses, and care managers can provide coordinated, effective, and efficient care.

WPF (163)
Web page: HIE in California. World Privacy Forum, public interest research group.
Unknown US A Health Information Exchange, or HIE, is technology that enables the electronic movement of health-related information among health care providers and others. HIEs are an increasingly popular way for hospitals, pharmacies, labs, and emergency room physicians to share patient information. Some HIEs just share information within one hospital network, some share information across many hospitals or physicians in a region, and some HIEs share information across the state.
267. Wright  This exchange of information helps reduce medical errors and redundant medical procedures as well as improves patient safety and well-being.