Introduction 1 2 5 6 7 8 9 10 11 Table 1 It was recognized that in order to fully explore the area, multiple sources of information would need to be examined. While identifying the scope of eHealth research was a crucial objective, the published research literature presents a filtered record of activity and thinking and, given the fast-moving pace of the field and its importance beyond academia, nonresearch sources are likely to yield rich information about the current status of eHealth and future trends. For this reason we conducted two parallel, large scale reviews—one focusing on the medical and related scientific literature and the other drawing on alternative sources available via the World Wide Web, including independent scoping exercises (of which there have been several), policy documents and technology reports. The results of these exercises were converged in order to derive a conceptual map and are considered together in this report. Table 1 Potential eHealth areas and issues considered at the outset of the project What issues currently dominate eHealth? What is going on in eHealth? What emerging technologies are likely to impact on health care? How does research inform eHealth? How do developments in eHealth inform research? Professional Clinical Informatics Electronic Patient/Health Records (EPR, EHR) Healthcare Business Management Consumer Health Informatics New Technologies Research Input Research Outcomes Methods Assessing the Taxonomic Structure of Research Databases and the Presence of eHealth In the formative stage of the project, we explored the subject taxonomies, or thesauri, of multiple databases of abstracts in order to identify high-level subject headings which could be used to profile the volume and content of the medical informatics literature and to construct searches for pertinent evidence. In the case of Medline the thesaurus containing a hierarchical controlled vocabulary is referred to as Medical Subject Headings, or MeSH (see below). As part of this we sought to assess whether eHealth was explicitly represented within these thesauri. A further objective was to determine the ontological structure of the databases in relation to medical informatics and eHealth and the implied relationships between alternative subfields. The databases examined were Medline (PubMed), the Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Science Citation Index (SCI), the Social Science Citation Index (SSCI), the Cochrane Library Database (including Dare, Central, NHS Economic Evaluation Database [NHS EED], Health Technology Assessment [HTA] database, NHS EED bibliographic) and Index to Scientific and Technical Proceedings (ISTP, now known as ISI proceedings), all of which predate the targeted search period. Exploring the Composition of the Medical Informatics Literature Using the Existing MeSH Thesaurus Anatomy Information Science Ankle Medical Informatics Medical Informatics Using eHealth as a Search Term eHealth Ehealth OR e-health OR e*health Profiling the Literature From Wider Web-Based Sources a b e health, e-health, ehealth, healthcare information technology healthcare computing previous exercises to map, scope or define eHealth; white papers, technical reports, predictions and early research reports on aspects of technology in health care, eHealth related policy, evaluation and trends, from the United Kingdom, Europe and beyond; funding programmes for eHealth- and/or health-and-technology - focused research and development; relevant articles from computing and information science-focused academic publications; eHealth and health technology-focused websites, web logs and online journals, online ehealth news feeds, email discussion groups and email newsletters; online sources with a focus on human-computer interaction, usability and accessibility, with specific attention on health care issues; technology-oriented news websites profiling general and health-related trends and developments; online studies, reports and statistical surveys relating to general technology take-up; consumer purchasing trends; attitudes and strategies of consumers and clinicians towards adoption of technology in general and for health care-focused tasks in particular; evaluation of the effectiveness of technological innovation, in the health care sector and beyond. Given the increasing online availability of refereed academic literature there was inevitably some overlap between the information identified by the two searches. Aggregating and Analyzing Definitions of eHealth Scientific abstracts identified using the key word search were examined in order to assess the presence of definitions. While hand searching of full text articles was not a primary objective, this was done where easy Web-based access to this information was available. In the case of Web-based reports or commentary the definition was extracted from the page in which it appeared or was quoted. In both cases the initial extraction was performed by one research fellow and the results checked for inclusion eligibility by a second investigator. Our aim was not to perform an exhaustive and systematic review of definitions (because of time constraints) but to aggregate those appearing most easily and commonly in the research and wider arenas, as a means of supplementing our wider scoping study. The aggregated definitions were then analyzed thematically in order to assess the applications, stakeholders, contexts and theoretical perspectives targeted, so that the heterogeneity of conceptualizations could be determined. They were also considered with reference to the perspectives of the defining individual or organization and associated clarifications within the source document. Results Assessing the Taxonomic Structure of Research Databases and the Presence of eHealth Figure 1 Information Science That eHealth has yet to be explicitly included among these thesauri, indicates the relative youth of the topic and the lack of an agreed conceptual definition. The literature relevant to eHealth is thus distributed among a range of existing MeSH fields. Medical Informatics Public Health Informatics Medical Informatics Computing Medical Informatics Applications Medical Informatics Applications Decision Making Computer Assisted Computer Assisted Therapy and Diagnosis Information Systems Information Storage and Retrieval Medical Informatics Computing Internet Public Health Informatics Medical Informatics Applications Medical Informatics Computing Table 2 12 Figure 1 Hierarchy of MeSH descriptors found below the Medical Informatics descriptor in the MeSH tree Table 2 12 Applied Technology Information Technology Infrastructure Data-Infrastructure Related Applications and Products Human-Organizational Education and Knowledge Algorithms Bioinformatics Biosignal processing Boolean logic Cryptology Human genome related Human interfaces Image processing Mathematical models in medicine Pattern recognition Archival-repository systems for medical records- EPR-CPR-EMR Authentication Chip cards in health care Distributed systems Health professional workstation Interfaces Knowledge based systems Networks Neural networks Pen based Security Speech recognition Standards Systems architecture Telehealth User interfaces Classification Coding systems Concept representation-preservation Data acquisition-data capture Data analysis-extraction tools Data entry Data policies Data protection Database design Indexing Syntax Language representation Lexicons Linguistics Modeling Nomenclatures Standards Terminology-vocabulary Thesaurus tools Biostatistics Clinical trials Computer-supported surgery Decision support Diagnosis related Disease management EPR-CPR-EMR Epidemiological research Hosp IS Event-based systems Evidence based guidelines Expert systems Health services research Health Information Systems management Knowledge-based systems Laboratory data Image processing Operations/resource management Outcomes research and measurement Quality management Patient identification Patient monitoring Minimum data sets Supply chain Telematics Telemedicine Assessment Compliance Cognitive tasks Collaboration Communication Economics of IT Ethics Implementation-deployment Diffusion of IT Evaluation Human Factors Legal issues, implementing national laws Management Managing change Needs assessment Organizational redesign processes Organizational transformation Planning Policy issues Privacy Project management Security Strategic plans Unique identifiers User-computer interface Bibliographic Cognitive learning Computer aided instruction Computer-supported training Consumer education Continuing education Digital libraries E-Business Health/medical informatics education Information management- dissemination Knowledge bases Knowledge management Learning models Online/distance education Clinical Disciplines Exploring the Composition of the Medical Informatics Literature Using Existing Taxonomic Systems Figure 2 Medical Informatics Figure 2 Number of publications over time indexed with the MeSH descriptor Medical Informatics medical informatics computing, medical informatics applications, public health informatics Information Systems; Therapy, Computer Assisted Clinical Laboratory Information Figure 3 Figure 4 Multimedia Appendix 1 Figure 3 Number of publications over time indexed with the MeSH descriptor Clinical Laboratory Information Systems Figure 4 Number of publications over time indexed with the MeSH descriptor Diagnosis, Computer Assisted Using eHealth as a Search Term eHealth Medical Informatics When duplicates across databases were discarded we identified a total of 392 publications which explicitly referred to eHealth in the title, abstract, or journal title. Of these, most were represented in Medline. Appearing only in the Medline database were 283 (72%) articles, 54 (14%) only on the CINAHL database, and 55 (14%) only on the SCI, SSCI and ISTP databases. Figure 5 Journal of Telemedicine and E-health Figure 5 Number of publications found using the search term eHealth (or variants) in 5 research databases by year. In Which Journals Do Publications Using the Term eHealth Appear? eHealth eHealth Journal of Medical Internet Research Managed Care Interface Journal of AHIMA / American Health Information Management Association Journal of Telemedicine and E-health, eHealth Table 3 Multimedia Appendix 2 Table 3 Topical areas of journal titles containing articles using the term eHealth Main Topic Area More Specific Topics Number of Publications (%) Information Technology Telemedicine * Medical Informatics 35 (9%) Internet 23 (6%) Medical Computing 6 (1.5%) Biotechnology 2 (0.5%) Others 17 (4 %) Sub total 207 (53%) Clinical Specialist Medical 30 (8%) Generalist Medical 16 (4%) Nursing 13 (3%) Others 18 (4%) Sub total 77 (19%) Health Services Management 30 (8%) Case Management 16 (4%) Others 15 (4%) Sub total 61 (16%) Finance Sub total 7 (2%) Legal Sub total 4 (1.5%) Education Sub total 3 (1.5%) Others Sub total 28 (7%) Total 387 (100%) * Journal of Telemedicine and E-health e-health What Topics are Covered in the Literature Using the Term eHealth? Journal of Telemedicine and E-health Figure 6 Figure 6 Map of topics in published articles using the term eHealth Definitions of eHealth 13 52 Table 4 Table 4 43 17 16 27 40 45 14 46 50 all stakeholder groups 22 Table 4 Definitions of eHealth identified from searching databases of scientific abstracts and wider Web-based information sources Definition Source Date Technologies Specified Applications Specified Stakeholder Focus (and Other Concepts) 1) “e-Health is a consumer-centred model of health care where stakeholders collaborate, utilizing ICTs, including Internet technologies to manage health, arrange, deliver and account for care, and manage the health care system” 13 14 ICTs including Internet General: manage health, arrange, deliver and account for care, and manage the health care system Consumer centered but also emphasizes collaboration with providers 2) “Healthcare delivery is being transformed by advances in e-health and by the empowered, computer-literate public. Ready to become partners in their own health and to take advantage of online processes, health portals, and physician web pages and e-mail, this new breed of consumer is slowly redefining the physician/patient relationship. Such changes can effect positive results like improved clinical decision-making, increased efficiency, and strengthened communication between physicians and patients.” 15 2001 General: healthcare delivery Consumers (Change. Citizen empowerment. Physician/patient relationship/ communication. Improved clinical decision making, efficiency) 3) “The "e-health" era is nothing less than the digital transformation of the practice of medicine, as well as the business side of the health industry…. The Internet is the next frontier of health care. Health care consumers are flooding into cyberspace, and an Internet-based industry of health information providers is springing up to serve them. Internet technology may rank with antibiotics, genetics, and computers as among the most important changes for medical care delivery.” 16 2000 Internet The practice of medicine as well as the business side of the health industry 4) “E-health—any electronic exchange of healthcare data or information across organizations—reflects an industry in transition…. The Internet clearly drives the development and adoption of e-health applications; standing alone, it has the reach, the infrastructure, and the acceptance to achieve widespread change.” 17 2000 Internet Electronic exchange of healthcare data or information across organizations 5) "a new term needed to describe the combined use of electronic communication and information technology in the health sector... the use in the health sector of digital data - transmitted, stored and retrieved electronically - for clinical, educational and administrative purposes, both at the local site and at distance" 18 19 Combined use of electronic communication in and IT in the health sector. Digital data transfer Transmission of digital data locally and across distances, for clinical, educational and administrative purposes Professionals and organizations 6) “e-health is the use of emerging information and communication technology, especially the Internet, to improve or enable health and healthcare.” 20 21 Emerging ICTs, especially the Internet General: To improve or enable health and health care Not specified but implies consumers and providers 7) “e-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of-mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology.” 22 2001 Broad definition encompassing many aspects of health informatics but focusing on the Internet and related technologies Delivery of health services and information 8) “Many of the major forces of change impacting health care today have technological underpinnings, and many of the less desirable impacts may have technological solutions. Two related technological forces are transacting business, online (e-business) and delivering health care online (e-health).” 23 2001 Internet General: Delivering healthcare 9) “ehealth includes use of the internet or other electronic media to disseminate health related information or services.” 24 2004 Dissemination of health related information or services Implies consumers 10) “As a special expression of e-business in the health service the sphere of e-health has developed in recent years which increasingly manifests itself in the internet via health portals. Next to the transmitting of medical contents, the offer of community functions and the trading with goods from the medical sector, these health portals now increasingly provide advisory services for citizens by medical experts.” 25 2002 Increasingly manifests itself in the Internet via health portals. 11) “e-Health (use of interactive communication and information technologies to engage in health-related activities) includes not only telehealth-related media and telecommunications but also a wide array of consumer and healthcare provider activities that use the Internet.” 26 2002 Interactive ICT, telehealth, internet etc General: health-related activities Consumer and healthcare provider 12) “ …technologies with practical applications that have the potential to improve both quality of and access to healthcare….Telemedicine, Health Information Systems, Databases, Genomics, Biotechnology, eLearning, Continuing Professional Development, Nanotechnology, Drug Treatment Technologies, Decision Making Tools, Diagnostic Aids, eLibraries, Laboratory tools, and Robotics are all innovative or 'disruptive' technologies that promise a better health for our children.” 27 2002 Wide range of informatics applications that may contribute to improved quality of and access to healthcare 13) “e-Health offers the rich potential of supplementing traditional delivery of services and channels of communication in ways that extend the healthcare organization's ability to meet the needs of its patients. Benefits include enhanced access to information and resources, empowerment of patients to make informed healthcare decisions, streamlined organizational processes and transactions, and improved quality, value, and patient satisfaction.” 28 2003 Not specified Delivery of services Communication. Access to information and resources. 14) “the use of the Internet for health purposes” 29 2003 Internet General: “Health purposes” Any 15) "a means of applying new low cost electronic technologies, such as 'web enabled' transactions, advanced networks and new design approaches, to healthcare delivery. In practice, it implies not only the application of new technologies, but also a fundamental re-thinking of healthcare processes based on using electronic communication and computer-based support at all levels and for all functions both within the healthcare service itself and in its dealings with outside suppliers. eHealth is a term which implies a way of working rather than a specific technology or application". 30 31 16) “The healthcare industry's component of business over the internet.” 32 2001 Internet Business Implies organizations 17) "The application of the Internet and other related technologies in the healthcare industry to improve the access, efficiency, effectiveness, and quality of clinical and business processes utilized by healthcare organizations, practitioners, patients, and consumers to improve the health status of patients." 33 2003 Internet and related technologies Improvement of access, efficiency, effectiveness and quality of clinical and business processes Organizations, practitioners, patients, consumers 18) “eHealth includes the development, application and implementation of technology to improve effectiveness in healthcare. But it also includes getting it out there wherever it's needed in the service and making it happen across the service. It includes the use of telemedicine and clinical systems used for diagnosis and care pathways. We also apply the term to the policies and protocols that assure the confidentiality and security of sensitive data. Most of all it includes those aspects that support major change of working practice - training, support and Organisational Development.” 34 2003 Technology 19) “…using Information and Communications Technologies to ensure the right treatment to each patient, specialised to each individual's context and situation, and to deliver healthcare where patients and providers need not be in the same place at the same time. 35 Un-dated ICTs Delivery of personalized patient care. Telemedicine implied Not specified. Implies provider focus but also interaction with patients 20) "Put simply, e-health is a wide-ranging area of social policy that uses new media technologies to deliver both new and existing health outcomes. In the UK, it incorporates everything from NHS Direct online to Internet pharmacies to webcast operations involving consultants in another country…At the moment, the main focus of e-health is on patient empowerment and self-care. As the area develops, e-health could expand to include online long-term disease management, personalised health checks, and more efficient primary care services due to informed patients accessing the healthcare system at the most appropriate point." 36 2000 21) “something to do with computers, people, and health”(Centre for Global e-Health Innovation, 2003) 37 2003 Computers in general Very broad – computers, people and health Implies all stakeholders 22) “the application of information and communication technologies (ICT) across the whole range of functions which, one way or another, affect the health of citizens and patients.” 38 2003 ICTs Broad – the whole range of functions which, in one way or another, affect the health of citizens and patients All stakeholders. Providers, patients, citizens. 23) “the emerging world of e-health can be defined as the application of information, communication and video technologies to the delivery of timely, professional and safe healthcare.” 39 2004 ICT and video technologies Broad – delivery of timely, professional and safe care Not specified. Implies professional perspective. 24) “the use of emerging interactive technologies (i.e., Internet, interactive TV, interactive voice response systems, kiosks, personal digital assistants, CD-ROMs, DVD-ROMs) to enable health improvement and health care services. For this Initiative, these technologies should focus primarily on health behavior change and chronic disease management for consumers/patients.” 40 2002 Emerging interactive technologies (Internet, interactive TV, interactive voice response systems, kiosks, personal digital assistants, CD-ROMs, DVD) Consumers, patients 25) “the use of ICT to support and improve healthcare” 41 2002 ICT General: support and improve health care Not specified. 26) "eHealth means taking the most recent developments in computer and networking technology, and applying it to the problems facing the healthcare community in all its forms - eHealth is the endeavour to produce reliable, easy-to-use, highly-automated, accurate systems, so that health care professionals can spend less time and resources on finalising the paperwork, and more time doing what they do best - taking care of people's health!" 42 Un-dated Recent developments in computer and networking technology 27) “The "e" is for electronic. Placed before the word health, it implies all things transmitted and technological in health care, which help improve the flow of information and the process of health care delivery. "E" networks integrate isolated towers of information and create new knowledge through the creation of relational databases. The spectrum of "E" is broad and goes beyond the use of a computer as a box on the desktop. It includes wireless communication using hand-held devices and the storage and function by the microchip which is revolutionizing health care, as it is inserted into everything we use to diagnose, treat, record, sort, analyze, and conclude. It also incorporates electronic forms of care delivery, such as telemedicine, providing health care over a distance, communicating by sound and image transmission. E-health is connectivity; it is transactional; it is clinical. It is informational, interactive and interventional.” 43 Un-dated 28) "the health services organisation and societal approach to health and health services which result from the introduction of, and increasing access to, new digital technologies: including the Internet, other computerised networks and tele- or distant health care facilitated by new digital technologies". 44 2002 29) “More commonly known as “eHealth”, the headings of Telemedicine and Telecare are themselves subsumed under the framework category of "health informatics", which basically means the delivery of healthcare and medical knowledge through the application of advanced information and computer technologies.” 45 2003 Advanced information and computer technologies Telemedicine and Telecare. 30) “The big difference between yesterday's knowledge-based patient care and that of tomorrow is a fundamental premise that patients will explore the web world with a desire to learn more about their condition, including its treatment and prognosis. This has evolved into the concept of e-health” 46 2003 Internet Patient information and decision support 31) “eHealth signifies a concerted effort undertaken by some leaders in healthcare and hi-tech industries to harness the benefits available through convergence of the internet and healthcare…” 47 Un-dated Internet None specified 32) “eHealth describes the application of information and communications technologies (ICT) across the whole range of functions that help health. It is the means to deliver responsive healthcare tailored to the needs of the citizen.” 48 2003 ICTs Broad – the whole range of functions that help health Citizens (consumers, patients, public) 33) “E-health is a new term used to describe the combined use of electronic communication and information technology in the health sector OR is the use, in the health sector, of digital data-transmitted, stored and retrieved electronically-for clinical, educational and administrative purposes, both at the local site and at a distance.” 49 Un-dated Clinical, educational and administrative purposes, at the local site and at a distance Organizations/professionals 34) “Using the internet and other electronic media to disseminate or provide access to health & lifestyle information or services” 50 2003 Internet and other electronic media Access to health and lifestyle information or services 35) “e-Health refers to all forms of electronic healthcare delivered over the Internet, ranging from informational, educational and commercial "products" to direct services offered by professionals, non-professionals, businesses or consumers themselves. e-Health includes a wide variety of the clinical activities that have traditionally characterized telehealth, but delivered through the Internet. Simply stated, e-Health is making health care more efficient, while allowing patients and professionals to do the previously impossible.” 51 2001 Internet 36) “E-health is a very broad term that encompasses many different activities related to the use of the Internet for healthcare. Many of these activities have focused on administrative functions such as claims processing or records storage. However, there is an increasing use of e-health related to patient and clinical care.” 52 2001 Internet Administrative functions, patient and clinical care Discussion eHealth Medical Informatics Medical Informatics Applications Research articles explicitly referring to eHealth or its variants begun to appear in 2000 and are accumulating rapidly. The majority of such articles are indexed by Medline, although others appear in alternative databases. Such articles are published in a wide range of journals, spanning information science to law, but they are most commonly represented in journals related to health care information technology and telemedicine. A vast array of topics is covered by research articles referring to eHealth, highlighting the diffuse nature of the field and the lack of an agreed conceptual definition. 37 32 45 19 18 50 53 54 22 Medical Informatics 31 22 21 22 30 55 48 9 21 22