AAAA Addis Ababa Action AgendaAfDB African Development Bank App Software Applications CARICOM Caribbean Community and Common Market CDO Chief Data Officer CIO Chief Information Officer CPI
Trang 1Alfredo M Ronchi
Toward a New Model
of (Inter)active Community
Trang 3Alfredo M Ronchi
e-Services
Toward a New Model
of (Inter)active Community
Trang 4Milano, Italy
ISBN 978-3-030-01841-2 ISBN 978-3-030-01842-9 (eBook)
https://doi.org/10.1007/978-3-030-01842-9
Library of Congress Control Number: 2018961013
© Springer Nature Switzerland AG 2019
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Trang 5trans-In order to introduce this volume, let us review a little bit of the history of informationtechnology One of the most significant changes to occur in the field of informationtechnology over the last few decades was the implementation of real-time communica-tion and information exchange between computers—in one word: networking.
A computer was originally considered to be like Leibniz’s1“monad”, an ultimateatom without windows and doors: a sealed entity Intercommunication processesenabled external access to these monads, allowing information and data exchangebetween them and thus multiplying their added value; networks of computers possessexpanded functionalities and services A number of different stand-alone proprietarynetworks were gradually merged into the network of networks: the Internet
The Internet represents one of the most successful examples of the bene fits of sustained investment and commitment to research and development of information infrastructure Beginning with the early research in packet switching, the government, industry and academia have been partners in evolving and deploying this exciting new technology.2
1 Gottfried Wilhelm Leibniz (also Leibnitz or von Leibniz) was born on 1 July 1646 (Leipzig, Germany) and died on 14 November 1716 (Hanover, Germany) School tradition: rationalism Main interests: metaphysics, epistemology, science, mathematics and theodicy Notable ideas: calculus, innate knowledge, optimism and monad See http://en.wikipedia.org/wiki/Gottfried_Leibniz , last accessed February 2019.
2 B M Leiner et al (2003) A brief history of the Internet Internet Society, Reston, VA (see http:// www.isoc.org/internet/history/brief.shtml , last accessed February 2019).
v
Trang 6Of course, one of the main drivers for Internet usage was the introduction of thehypertext transfer protocol (http), which led to the birth of the World Wide Web,thanks to the contributions of Tim Berners-Lee and Robert Cailliau at CERN3in
1990 and the success of Mosaic at NCSA4in 1992, thefirst web browser
Conceived and developed by“end-users”, one of the most important istics of the Web community, in thefirst two or three years of its life, was the bottom-
character-up decision mechanism it employed Enhancements and extensions were proposed,discussed and implemented mainly by active members of the community ofresearchers and experts involved in the process
The Web community at that time was a mixture of ICT experts and scientificcontent managers The double role of these prosumers was probably one of the keyinnovative aspects of that community during that period The subsequent gradualdrift from technology developers to general users is a natural process that oftenoccurs with mature technologies It happened, for instance, in thefield of computergraphics, where computer graphics pioneers worked side by side with creativepeople and special effects (fx) designers
The development of Internet technology unleashed creative energies, the firstgenerations of Websites, mainly due to volunteers often not belonging to the ITsector; don’t forget that the cradle of the Web was CERN, the temple of physics andsubatomic particles Web technology was for sure an enabling technology, offering
to almost everyone the opportunity to contribute to the creation of the textual and,later on, visual cyberspace
The Internet has incredibly facilitated access to mass communication This
influenced even news and journalism as we will describe later It combines aworldwide broadcasting capability with a mechanism for information dissemination,which offers us the opportunity to reach a wide audience with minimal effort Beforethe Internet, the only way to reach wide audiences was radio and television broad-casting, and before these were invented, mainly printed materials or heralds Inaddition, it is a medium that encourages collaborations and interactions betweenindividuals and their computers almost without regard for geographic location.After the“publishing” hangover, it was the time to manage and structure andindex this blob of content and upgrade from information provision to serviceprovision ICT-based innovation“is not only a matter of technology” The mainaim of this work is to bridge the gap between technological solutions and successfulimplementation and fruitful utilisation of the main set of e-Services Differentparameters are actively influencing the success or failure of e-Services: cultural
3 The name CERN is derived from the acronym for the French “Conseil Européen pour la Recherche Nucléaire ”, or European Council for Nuclear Research, a provisional body founded in 1952 with the mandate of establishing a world-class fundamental physics research organization in Europe At that time, pure physics research concentrated on understanding the inside of the atom, hence the word
“nuclear” https://home.cern , last accessed February 2019.
4 National Center for Supercomputing Applications, http://www.ncsa.illinois.edu , last accessed February 2019.
Trang 7aspects, organisational issues, bureaucracy and workflow, infrastructure and nology in general, users’ habits, literacy, capacity or merely interaction design.This requires having a significant population of citizens willing and able to adoptand use online services and developing the managerial and technical capability toimplement applications to meet the needs of citizens.
tech-A selection of success stories and failures, duly commented on, will help thereader in identifying the right approach to innovation in governmental and privatee-Services
This volume is part of a collection of books; thefirst three volumes are e-Citizens:Toward a New Model of (Inter)active Citizenry, e-Democracy: Toward a NewModel of (Inter)active Society and e-Services: Toward a New Model of (Inter)activeCommunity, all of them published by Springer International 2019
Target Audience
Public authorities, decision-makers, stakeholders, solution developers, universitystudents
Prerequisite Knowledge of Audience
Informed on e-Content and e-Services, basics on technology side
Milano, Italy Alfredo M Ronchi
Trang 8Interior laboratory—Scene 53
“The two enter a cylindrical laboratory There is a huge glass turbine in the middle with the metal glove inside A DNA chain scrolls on the computer screen Mactilburgh starts the operation rolling as Munro puts his hand on the self-destruct button, ready to use
it Thousands of cells form in the heart of the generator, an assemblage of DNA elements Then the cells move down a tube, like a fluid, and gather in an imprint of a HUMAN body Step by step bones are reconstructed, then the nervous and muscular systems Whole veins wrap around the muscles An entire body is reconstructing before our very eyes ASSISTANT End of reconstruction, beginning of reanimation.”
[L E C INQUIÈME É LÉMENT ( THE FIFTH ELEMENT ) IS A 1997 FRENCH SCIENCE FICTION FILM DIRECTED
BY LUC BESSON AND STARRING BRUCE WILLIS , GARY OLDMAN AND MILLA JOVOVICH.]
This scene shows the way to reconstruct human bodies starting from a minimumportion of DNA; the sciencefiction machinery performs a “3D print” of an entirebody, decoding the instructions encapsulated in the DNA; the scene looks very close
to addictive 3D printing This technology enjoyed great popularity in differentfieldsfrom dentists to hobbyists; a very special 3D printer was on display on the occasion
of the WSIS Forum 2018 in Geneva; this 3D printer used chocolate instead ofmonomers, printing chocolate blocks instead of bones
Does sciencefiction anticipate our near future even in the field of e-Health? Someexperiments carried out in thefield of biomaterials and biotechnologies have alreadytested the use of 3D printers with nanoparticles, so we never know Anyhow 3Dgraphics and printing are already in use to create different prostheses
Thefield of education and learning was till now the one that didn’t benefit toomuch from digital technologies, but at the same time suffered more than many othersectors from the shift of paradigm due to cyber technologies The young aresignificantly influenced by digital technology; as we will see later in the chapterdevoted to e-Learning, the huge number of hours spent playing videogames andwatching television has trained their brains to behave in a very different wayenabling parallel processing and immediate interaction These completely new
ix
Trang 9abilities, together with the digitally empowered direct access to information, havecreated an increasing gap in information transmission between“digital immigrant”teachers and“digital native” pupils They are used to processing parallel input fromaudio, video and chats, incredibly improving their ability to absorb information andrather complex concepts They take advantage of virtual and enhanced reality toactivate the most powerful and phylogenetic learning system, the perceptive-motorsystem They learn by directly experiencing the specific subject by being virtuallyimmersed in that environment, by being“hands-on”, trying and trying again; in otherwords,“learning by doing”.
Following the same fil rouge, we approach “Culture” as a wide territoryencompassing different humanities such as heritage in the UNESCO vision, asdescribed in detail in e-Culture5, but even issues and drawbacks due to the combinedaction of information communication technologies and globalisation The globaltrend tends to homogenise andflatten diversities in many fields; diversities have to
be considered richness not barriers As a consequence, a relevant number of culturalmodels and languages risk being jeopardised and disappearing; they refer to“minor-ities”, or as better expressed by UNESCO IFAP they refer to “minoritised” lan-guages and cultural models under the pressure of the dominant ones
After learning and culture, the last chapter is devoted to media and news, one ofthe sectors that on one side deeply took advantage of ICTs and on the other sidesignificantly contributed to forging the brains of young generations This phenom-enon is termed neuroplasticity by experts; social psychology offers compelling proofthat thinking patterns change depending on an individual’s experiences It is acommon understanding that people who grow up in different cultures do not justthink about different things; they actually think differently The environment andculture in which people are raised affects and even determines many of their thoughtprocesses
A major part of the population has already started the journey from Citizens toe-Citizens: already books medical services and downloads the reports through theInternet or receives customised press reviews thanks to news aggregators collectingbreaking news concerning their preferred topics on thefly
Let’s now start this journey from Health to Media
Milano, Italy Alfredo M Ronchi
5 Ronchi A.M (2009), e-Culture: Cultural Content in the Digital Age, ISBN 978-3-540-75273-8, Springer, Berlin Heidelberg.
x Being Human in the Digital Age
Trang 101 e-Health: Background, Today’s Implementation and Future
Trends 1
1.1 Introduction 2
1.2 Recent Background 2
1.3 e-Health in Europe 6
1.4 A Global Vision 9
1.5 From Medical Systems to e-Health 12
1.6 From e-Health to m-Health 16
1.7 Archiving Electronic Patient’s Folders 18
1.8 In the Clouds 22
1.8.1 Health in the Clouds 26
1.9 Ethical Dimensions of the Information Society 28
1.9.1 Ethics 28
1.9.2 Information Ethics (Infoethics) 29
1.9.3 Ethical Issues 31
1.9.4 Bioethical Aspects in e-Health and“m-Health” 32
1.10 e-Health and Privacy Issues 33
1.10.1 The RFID Radio Technology, Ethics and Privacy 34
1.10.2 Medical Device or Fitness Tool? 35
1.10.3 The Use of Data and Privacy 38
1.10.4 Informed Consent and the Warsaw Declaration 40
1.10.5 EU General Data Protection Regulation (GDPR) 43
1.11 A Galaxy of Health Services 44
1.11.1 Services in the Field of Drugs 46
1.11.2 How to Report on Patient’s Satisfaction 46
1.11.3 Education and Awareness 48
1.11.4 Mobile Virtual Laboratories and Mobile Medical Facilities 54
1.11.5 “Makers” in the Field of Health 55
xi
Trang 111.12 Dependency and Technological Vulnerabilities 56
1.12.1 The Self-Management of Health 58
1.13 “Seniors”: An Increasing User Sector 59
1.13.1 Social Weakness 60
1.13.2 Aging in Europe 61
1.13.3 Most Common Chronic Diseases 62
1.14 MUSME: The Interactive Museum of History of Medicine 64
References 67
2 e-Learning: How Teaching and Training Methods Changed in the Last 20 Years 69
2.1 Introduction 70
2.2 The European State of the Art as It Appears from Statistics 71
2.3 The Digital Revolution and Other Trends 74
2.4 The Human Capital 76
2.5 ICT Bottlenecks 77
2.6 ICT and the Young 78
2.7 Leading the Change or Losing the Challenge? 79
2.8 Dealing with Digital Natives 81
2.9 Causes and Effects: The Origin of This Pandemia 84
2.10 Lost Something, Any Concern, Drawbacks? 86
2.11 Some Key Aspects of Computing That Make the Difference 87
2.12 Gamification 88
2.13 Educational Institutions Policies 89
2.14 Virtual Laboratories 90
2.15 Videocassette and On-Line Lectures 91
2.16 Improvements Due to Technology 92
2.17 Future Developments 95
2.18 It Is Time to Reshape Educational Methodology 96
2.19 Closing Remarks 97
References 111
3 e-Culture: On Culture in the Digital Age 115
3.1 Introduction 116
3.2 Digital Tangible and Intangible Heritage 118
3.3 Cultural Heritage 119
3.4 Origin of Museums 120
3.5 Science and Technology Museums 122
3.6 Art Collections 123
3.7 The Culture Cycle 123
3.8 Entering the Digital Communication Era 125
3.9 Virtual Universes and Heritage 126
3.10 Super Information Highways v/s Information Society 132
3.11 The Invisible Universe of Data 135
3.12 A Web of Cultural Content 136
Trang 123.13 Technology and Recommendations 142
3.14 Extending the View on Heritage 143
3.15 European Regulations and Heritage 148
3.15.1 The Regulatory Framework 151
3.15.2 EU Regulations and the Impact on Cultural Heritage 152
3.15.3 The Economics of Cultural Heritage 157
3.16 The Concept of“Values” and Its Potential Impact 158
3.17 The Economic Dimension of“Values” 162
3.18 The Role of Taxonomy in Information Search 164
3.19 A Taxonomy of European Cultural Heritage“Values” 165
3.20 A Preliminary List of“Values” 166
3.20.1 Economic Values 166
3.20.2 Cultural Values 166
3.20.3 Communicability Values 167
3.20.4 Development Values 167
3.20.5 Accessibility and Fruition Values 168
3.20.6 Value of Universality 172
3.21 From Theory to Practice 179
3.22 The Role of a“Value” Platform 179
3.23 Culture Value Chain 181
3.24 Value Approach: Further Developments 183
3.25 Problems and Issues: Early Experiences 184
3.26 Making Cultural Heritage Alive: The Role of Cultural Mediators 187
3.27 Emerging Professional Profiles 189
3.28 Closing Remarks 191
References 191
4 e-Journalism and Media 195
4.1 The“Ws” 196
4.2 The“Information” Society 196
4.3 Freedom of Expression 196
4.4 The First“Asynchronous” Way to Communicate 197
4.5 Back to Journalism 205
4.6 Characteristics of Information Products 205
4.7 Timeliness of Delivery 206
4.8 Short Product Lifecycles 207
4.9 Perishability 208
4.10 Media of the Future; Can It Be Profitable? 208
4.11 Different Phases of On Line Newspapers 209
4.12 New Media: Evolution or Revolution? 210
4.13 Languages on the Internet 210
4.13.1 Globalisation and Cultural Diversity 211
4.13.2 ICT and the Internet in a Small World 213
4.14 Information as a Valuable Good 217
Trang 134.15 Public Domain and Copy Left 220
4.16 Unprotected Works 221
4.17 Works That Are No Longer Protected 221
4.18 Works That Have Never Been Protected 221
4.19 Market Models 223
4.19.1 Subscription or Purchase of a Single Copy 223
4.19.2 Newspapers and Gadgets 224
4.19.3 Free Model 224
4.19.4 Freemium, That’s to Say Free + Premium Services Model 225
4.19.5 Key Feature of the Internet News 225
4.20 The Sources 226
4.21 Digital Natives: What Are They Looking For? 229
4.22 Fake News 230
4.23 Cyber Technology and Public Opinion 233
4.24 Evolution of Fruition 236
4.25 New Consumer Model 237
4.26 WSIS C9 Media 238
4.27 Public Service Broadcasting 239
4.28 Case Studies 247
References 256
Index 261
Trang 14AAAA Addis Ababa Action Agenda
AfDB African Development Bank
App Software Applications
CARICOM Caribbean Community and Common Market
CDO Chief Data Officer
CIO Chief Information Officer
CPI Corruption Perceptions Index
DESA Department of Economic and Social Affairs
DPADM Division for Public Administration and Development ManagementEEA European Environment Agency
EGDI e-Government Development Index
EIA Environmental Impact Assessment
EPI e-Participation Index
FOI Freedom of Information
FOIAs Freedom of Information Acts
G2G Government-to-Government
GCC Gulf Cooperation Council
GFW Global Forest Watch
GIS Geographic Information System
GNI Gross National Income
GODAN Global Open Data for Agriculture and Nutrition
GPS Global Positioning System
HCI Human Capital Index
HCI Human–Computer Interface
HTML Hypertext Markup Language
ICT Information and Communication Technology
ICTs Information and Communication Technologies
IDRC International Development Research Centre
ILO International Labour Organization
INTOSAI International Organization of Supreme Audit Institutions
xv
Trang 15IoT Internet of Things
ITU International Telecommunication Union
LDC Least Developed Country
MAMA Mobile Alliance for Maternal Action
MDGs Millennium Development Goals
MENA Middle East and North America
METEP Measurement and Evaluation Tool for Engagement and
e-ParticipationMFI Micro Finance Institutions
MYS Mean Years of Schooling
NEPAD New Partnership for Africa’s Development
NGO Non-governmental Organisation
OECD Organisation for Economic Co-operation and DevelopmentOGD Open Government Data
OSI Online Service Index
OSM Open Street Map
PPPP Public–Private–People Partnerships
RSS Really Simple Syndication
SDGs Sustainable Development Goals
SIDS Small Island Developing States
SME Small and Medium Enterprise
SMS Short Message Service
SWOT Strengths, Weaknesses, Opportunities and Threats
TGEG Task Group on e-Government
TII Telecommunication Infrastructure Index
UGC User-Generated Content
UNCTAD United Nations Conference on Trade and Development
UNDG United Nations Development Group
UNDP United Nations Development Programme
UNECA United Nations Economic Commission for Africa
UNECE United Nations Economic Commission for Europe
UNECLAC United Nations Economic Commission for Latin America and the
CaribbeanUNEP United Nations Environment Programme
UNESCAP United Nations Economic and Social Commission for Asia and the
PacificUNESCO United Nations Educational, Scientific and Cultural OrganizationUNESCWA United Nations Economic and Social Commission for Western
AsiaUN-OHRLLS United Nations Office of the High Representative for the Least
Developed Countries, Landlocked Developing Countries andSmall Island Developing States
UNPOG United Nations Project Office on Governance
UNSC United Nations Statistical Commission
xvi List of Abbreviations
Trang 16UNU-IAS United Nations University Institute for the Advanced Study of
SustainabilityURL Uniform Resource Locator
W3C World Wide Web Consortium
WOG Whole of Government
WRI World Resources Institute
WSIS World Summit on the Information Society
Trang 17Chapter 1
Implementation and Future Trends
The analysis will adequately take into account the overall context including social,ethical and technological issues It draws a “big picture” where we considerdifferent regions of the world and different needs The contribution outlines towhat extent e-Health represents true innovation, which means having positiveimpact on society, making better the life of citizens in a broad sense We all knowthat the healthcare sector differs from country to country as a unique mix of public,unlicensed private, private and even voluntary set of services; not to forget insur-ance companies Starting from today’s added value applications we will try toidentify future trends and goals
© Springer Nature Switzerland AG 2019
A M Ronchi, e-Services, https://doi.org/10.1007/978-3-030-01842-9_1
1
Trang 181.1 Introduction
How can we measure success in e-Health? Is it a mere question of saving money ordoes it involve more? It is a foreseeable win-win strategy, better service, moresuccess stories, less costs? Is e-Health an opportunity to bridge the healthcare gaparound the world? What can we expect from virtual laboratories and electronicpatient folders? Do online medical services impact patient privacy? Last but notleast, do electronic patient folders last forever as usually required by law?
Moreover, very often we hear of user-centred design, and interaction design and
of the positive effects that good“design” can have, especially for industrial productsand on-line services; but what effect can a proper design have“indirectly” on theuser? How much can the“design” do for our welfare, to help us feel better in ourhome or even exert a positive influence on our overall health?
The healthcare sector cannot be considered as any other“e-Sector” What dopatients, or more simply Citizens, expect accessing healthcare premises or services?What is really relevant for them in the different regions of the world (e.g on-linesolution to check if a medicine is“original” or a dangerous clone)? Does the “bigbrother” effect due to remote monitoring and tele-medicine1play a positive role insuch a context?
What are the indicators of success of the operation; how do we determine thedegree of satisfaction of the user? By“commercial” success, the content of dedicatedinterviews, the expressed appreciation?
The expectancy of life in the last century has significantly grown; if we considerthis aspect as a performance indicator we can probably agree on a positive trend.Performance measuring in the healthcare sector may be related to a set of parametershaving as the main one the effect on the patient Apart from this we can considerorganisational issues, the promotion of a culture of wellbeing as a follow-up of thewell-known motto“prevention is better than cure”, time and money savings, infor-mation and knowledge sharing and more Applications and services will coverinformation, monitoring, education, safety and more
1.2 Recent Background
The health sector, if compared with other industries in adopting information nology, suffered a delay of 10/15 years until recent times Early deployment ofhealth information technology (HIT as it was known at that time) was primarily forfinancial accounting of medical transactions Even if in some way the health sectorhas been the birthplace of one of the most relevant and pervasive inventions of thelast century, the transistor, it was originally developed and patented as a device to
tech-1 Term first coined in the 1970s by Thomas Bird.
Trang 19fight deafness2 Later on, over time a number of cutting edge technologies addedvalue application in the Health sector: computer graphics, virtual reality, robotics,tele-presence, artificial intelligence and of course networking, to mention themain ones.
Experiments with computerized medical recordkeeping began in the 1960smainly in the US The first electronic health records (EHRs) were designed anddeployed starting in late 1960s and early 1970s By the middle of the 1970sapproximately 90% of the hospitals in the US used computers for business functions;there was similar penetration in Europe Hospitals used to access mainly bigmainframes as shared computational resources in order to manage their ownaccounting systems Later on, they extended the use to manage partial patient foldersrelated to medical exams In that period of time 1743 sites in the US processedelectronic data with some medical content
The majority of physicians adopted EHR systems in the 1980s thanks to thediffusion in the market of the personal computer Of course, PCs at that time theywere mainly stand-alone resources; few of them were connected to mainframes as
“intelligent” terminals The early use of EHR systems by medical doctors wasmainly to keep a personal record of patient references, specific health conditionsand treatments and last but not least billing
In the 1980s and 1990s incredible steps forward in diagnosis and care were due tothe increasing use of information technology; many times the re-use of computergraphics turned into medical imaging led to cutting edge medical systems More-over, late in the 1990s the introduction of 3D colour graphics broke theflat, grey-shaded and cryptic world of medical imaging PACS (Picture Archiving and Com-munication System) and laser printers revolutionised the management of medicalimages as well Of course, the enabling technology acting as backbone of suchevolution or, better, revolution in medical imagery was the creation of local broad-band networks
Between the 1980s and the 1990s, the number of computer-based medical examsincreased significantly from CT to NMR, 3D imagery, endoscopy Nano-devices and
“cyborg” prostheses
2 The invention of Transistors by John Bardeen, Walter Brattain, and William Shockley in 1947.
3 R.R Henley and G Widerhold, An analysis on automated ambulatory medical record systems, AARMS Study Group, UCSF, June 1975.
1.2 Recent Background 3
Trang 203D digital reconstruction from Medical Imagery (EC Project Argonaute 3D)
In 1991, the Institute of Medicine4in the United States declared the based patient record (CPR) as essential for health care, a message reinforced 7 yearslater on the occasion of the revised version
computer-The use of ICT in the medical sector enabled relevant innovations: distantassistance and information sharing The medical system called Telehealth means
“medicine at distance”, where “medicine” includes not only medical activities—involving ill patients—but also public health activities—involving healthy people[1] (Wootton1999)5 In other words, telehealth is a process and not a technology,including many different health care activities carried out at a distance For thesereasons, the term “e-Health” is an umbrella word used to define the electronicenablement of the health and disability support services in order to [2,3]:
• empower individuals and their families to manage their own health and pate better;
partici-• improve the co-ordination and integration of care delivery to individuals; and
• allow population health initiatives such as mapping notifiable diseases to occur in
a timely fashion
In summary, e-Health services provide a unique set of tools for overcoming many ofthe challenges that health delivery systems are facing today On one side, citizens want,and ageing societies will need, more and better healthcare On the other side publicfunds are limited, and many citizens cannot afford, or do not want to pay more for it
As underlined by Robinson [4],“For healthcare providers in modern healthcaresystems, this is a challenge The right approach to developing, implementing andusing effective e-Health can help address this challenge Healthcare providers canuse e-Health to improve quality and expand their capacity to meet this increasingdemand within available resources.”
4 Richard S Dick, Elaine B Steen, and Don E Detmer, Editors —Institute of Medicine, The computer based electronic medical record: essential technology for healthcare, National Academy Press, Washington, DC, 1991.
5 Wootton, R (Ed.) (1999b) European telemedicine 1998/99 London: Kensington Publications Ltd.
Trang 21According to Wootton [1] there are basically two reasons why e-Health is used:
“either because there is no alternative, or because it is in some sense better thantraditional medicine”
Addressing this issue, the goal of the chapter is to show that a wide spectrum ofe-Health applications provided better quality and improved productivity In partic-ular we will focus on the actual European situation
However, the success of e-Health is not linked to the solution of technicalproblems only e-Health is a complex process whose successful exploitation requires
a significant attention to ergonomics, human factors and organizational changes inthe structure of the relevant health service
For quite a long time Healthcare Information Technology (HIT) has been mostly
a chimera and pioneers in the realm have faced relevant difficulties and unsuccessfulstories Some implementations played the role of bad ambassadors, slowing downthe progress Some European telecom operators, for instance, invested time andresources in tele-medicine having no positive return of investment Practitionershave generally regarded EHR as costly, cumbersome, and offering little help fortasks at hand
A number of experiences were carried out in the past but these were mainlyconsidered as experimental services, addressing a limited number of users/patients,having almost no real impact on thefield The incredible and quick diffusion of theInternet and broadband connection has to be considered as a turning point in thehealth care domain, as it happened in other domains such as e-Government ore-Learning Internet and broadband enabled a completely new scenario: e-Healthwas born! The evolution trend was from one to one to one to many and many to manyand broadband made the difference
Thanks to the characteristics of the Internet some of the early projects addressedthe need to exchange and share medical information, more specifically that related torare pathologies One of thefirst high-level projects in this field was the so-called G7CARDIO project (1993–95); at that time the focus in the field of networking was onATM connections, the “silver bullet” of the time Back to CARDIO, the basicconcept was to share as much as possible information and medical data related torare heart pathologies in an attempt to combine the efforts in order to solve seriousproblems Thanks to an innovative approach, multimedia documents such as medicalstandard pictures (DICOM) and medical standard video clips were available on linefor the benefit of the medical service
Tele-medicine, remote-ECG, tele-monitoring, tele-consultation and more arevery well-known keywords Tele-medicine and tele-consultation are still the keyapproaches to providing medical care in developing countries Telecommunicationnetworks and IT-enabled peer-to-peer connections and data transfer thanks tomodems and, later on, digital lines
1.2 Recent Background 5
Trang 22Tiny“computers” have been embedded in a number of portable medical devicesand computer aided design systems have become the digital companions ofbio-engineers, together with nanotechnologies6and mechatronics.
The current environment in which health care is practiced and informationtechnology available to its practitioners is significantly different from that whichexisted in the last decades Due to the Internet technology the overall architecture ofdistance services has been reshaped and a limited set of peer-to-peer services havebecome, at the end, a full set of bidirectional multimedia interactive servicesincluding web 2.0 applications and more advanced and sophisticated solutions.There are differences in the temporal nature of information, the responsibilities ofeach member of the health care team, the need for a communications infrastructure tofacilitate coordination of care, and other logistical7 concerns which impact thedetailed design of information systems
Changes in the health care environment produced fundamental shifts in thedelivery of health care, favouring outpatient care over impatient care, primary careover specialty care, and guidelines-driven care over autonomous decision-making.Technological advances have overcome some barriers to computer-based patientrecords (CPRs) (e.g., World Wide Web applications that operate across distances onmany different computers) and heightened the visibility of others(e.g confidentiality policies and legislation)
Let’s try to better focus on this domain A first attempt to classify the servicesmight be by user: medical doctors, patients/citizens, and institutions Another poten-tial taxonomy might be by service: web portals (hospitals, experts, medical/chemicalcompanies, patients, etc.), on-line or off-line medical care services (exams andconsultations, virtual reality therapies, etc.), management systems (medical unitinformation systems, etc.), and educational applications (medical doctors, para-medics, employees, patients and citizens) The opportunities offered by e-Healthmay benefit additional sectors such as rare pathologies, developing and emergingcountries and“travellers”
1.3 e-Health in Europe
Healthcare is one of the most information-intensive sectors of Europeaneconomies and can greatly profit from recent advances in information and commu-nications technology Given that the health sector currently lags behind other
6 Researchers working in medical nanorobotics are creating technologies that could lead to novel health-care applications, such as new ways of accessing areas of the human body that would otherwise be unreachable without invasive surgery.
7 In principle, in order to fully bene fit from the e-Health approach, a general reshape of the organisation is needed including logistics and other infrastructure Communication and access to information are strictly related to organisational and infrastructural issues.
Trang 23sectors in the use of this technology, e-Health, there is great potential for rapid,sustained growth8.
For more than 30 years, the European Commission has developed through R&Dprogrammes ways of improving the delivery of healthcare through the application ofstate-of-the-art technologies, and the promotion of new systems and services based
on these9
EU action on health is based on three key principles10: integration, sustainabilityand focus on priority issues This has led to an integrated approach to health-relatedwork at the Community level, making health-related policy areas work togethertowards achieving health objectives
The EU Health Strategy, set out in May 2000, aims to integrate all EU related policies and concentrate resources where the Community can provide realadded value, without duplicating the work of the Member States or internationalorganizations11
health-General health policy lines were set out in the concept of a Europe of Health in
2002 Work was undertaken on addressing health threats, including the creation of aEuropean Centre for Disease Prevention and Control12(ECDC), developing cross-border co-operation between health systems and tackling health determinants Ashort presentation of ECDC, as provided by the centre, is:“The European Centre forDisease Prevention and Control (ECDC) was established in 2005 It is an EUagency aimed at strengthening Europe’s defences against infectious diseases It islocated in Stockholm, Sweden ECDC works in three key strategic areas: it providesevidence for effective and efficient decision-making, it strengthens public healthsystems, and it supports the response to public health threats ECDC core functionscover a wide spectrum of activities: surveillance, epidemic intelligence, response,scientific advice, microbiology, preparedness, public health training, internationalrelations, health communication, and the scientific journal Eurosurveillance ECDCdisease programmes cover antimicrobial resistance and healthcare-associatedinfections; emerging and vector-borne diseases; food- and waterborne diseasesand zoonosis; HIV, sexually transmitted infections and viral hepatitis; influenzaand other respiratory viruses; tuberculosis; and vaccine-preventable diseases All inall, ECDC monitors 52 communicable diseases.”
The EU Health Forum13, which brings together organizations active in health toadvise the European Commission on health policy, is also a key element of the EU
8 Stroetmann et al., 2006 —Carolyn Steele Gray, Stewart W Mercer, et al., 2017.
9 May you need further information, please refer to http://ec.europa.eu/health/ , last accessed February 2019.
1.3 e-Health in Europe 7
Trang 24Health policy The Forum enables the health community to participate in healthpolicy-making from the start.
EU health policy increasingly involves co-operation with and between the ber States, in particular on cross-border issues such as patient mobility
Mem-In 2004, in order to review the May 2000 Health Strategy and consider whetherand how it needed to be revised in the light of developments, the Commissionlaunched a reflection process14 The main outcome of this work is the concept thate-Health should be supported by the widespread dissemination of best practices.These should include the impact on access to healthcare and on its quality, assess-ments of cost productivity gains, as well as examples of addressing liability intelemedicine, reimbursement schemes, and accreditation of e-Health products andservices
In 2005, the Commission proposed a new strategic framework: i2010 One of thekey societal challenges recognized in the i2010 strategy is to make real improve-ments in the provision of healthcare, when our ageing society is placing increasingdemands on the underlying services and infrastructure
The e-Health market was in 2005 some 2% of total healthcare expenditure inEurope but has the potential to more than double in size, almost reaching the volume
of the market for medical devices or half the size of the pharmaceuticals market.Revenue in the“e-Health” market will amount to more than three million euros in
2018 Revenue is expected to show an annual growth rate in the period 2018–2020
of 14.3%15, resulting in a market volume of more than four million euros in 2020.The market’s largest segment is the segment “Heart Failure”, with a market volume
of about 1200 million euros in 2018 If we compare the European market with theUnited States one it is shown that most revenue is generated in the United States (US
$ 3821 million in 2018)
Research projects funded by the EU seek to develop e-Health systems andservices that focus on prevention, personalization and patient empowerment; specialcare is posed on gender-related medical treatments Current research activities focuson: personal health systems and the prevention of illness and diseases; improvingpatient safety; modelling and simulation of human physiology and disease-relatedprocesses
14 European Commission (2004) e-Health —making healthcare better for European citizens: An plan for a European e-Health area —com 356 Brussels: Commission of the European Communities Online: https://ec.europa.eu/digital-single-market/en/news/e-health-making-healthcare-better-euro pean-citizens-action-plan-european-e-health-area , last accessed February 2019.
action-15 Source Statista: dossier/ , last accessed February 2019.
Trang 25https://www.statista.com/study/29501/digital-health-industry-in-europe-statista-1.4 A Global Vision
In every country and at every level, information and communication tools are central
to health Access to ICTs, supported by a sound enabling environment, is critical forhealth services development, progress and their availability This applies whethere-Health is used by individuals searching for health information or support, pro-fessionals and facilities providing health care services, or public health servicesensuring monitoring, alert and response; or for strengthening citizen-centred healthsystems
There are some pillars related to the renovated vision
(a) Encourage the adoption of national e-Health strategies focusing on integratingICTs to support the priorities of the health sector and to provide reliable andaffordable connectivity to benefit all citizens;
(b) Promote the use of ICTs to strengthen health care and public health services,with special efforts to reach citizens in remote and under-served areas indeveloping countries;
(c) Facilitate innovation and access to e-Health applications to support health fessionals, improve local access to information, and enable theflow of informa-tion in health services and systems;
pro-(d) Ensure public trust and confidence in e-Health, through collaboration and broadadoption of legislations, policies, regulations and other measures that address theconcerns of the health sector, including those of a cross-border nature;
(e) Integrate the use of ICTs in preparing for, sharing information on, andresponding to disease outbreaks, disasters and other emergencies requiringinter-sectoral collaboration and exchange of information in real-time;
(f) Encourage to creating effective funding mechanisms, business models andpartnerships to accelerate and sustain e-Health efforts beyond pilot stages andensure scalability;
(g) Enable access to the world’s medical knowledge through the use of ICT;(h) Share good practice, evidence and progress on e-Health, to enable informeddevelopment of e-Health activities worldwide;
(i) Promote the measurement of e-Health and its impact the social and economicdevelopment at national and regional levels
The use of digital technologies contributes even to the preservation and tation of traditional medicine as it happens, for instance, for both Chinese TraditionalMedicine and African natural medicine
exploi-Beijing Traditional Chinese Medicine Digital Museum16, original title北京中医药数字博物馆, is a virtual museum of popular science available in both Chinese andEnglish aiming to spread the culture of Traditional Chinese Medicine as it relates to
16 Beijing Traditional Chinese Medicine Digital Museum (China 2011) Producer: Ms Wang Ting — Beijing Traditional Chinese Medicine International Exchange and Cooperating Center (BTCMIECC), http://en.tcm-china.org , last accessed February 2019.
Trang 26scientific knowledge Traditional Chinese Medicine (TCM) is said to be activelypractised in 162 countries and is increasingly attracting the attention of internationalmedical researchers As natural methods and low carbon lifestyles become thehallmark of the twenty-first century, TCM, a veritable miracle of medical achieve-ment, is becoming more and more attractive to discerning people worldwide As theauthors outlined on the occasion of the World Summit Award award ceremony held
in Cairo (Egypt) in 2011:“In China, no museum about Traditional Chinese cine exists, and the few affiliated to educational and research departments areinadequate” For this reason, Beijing Traditional Chinese Medicine InternationalExchange and Cooperating Centre (BTCMIECC), supported by the Beijing Admin-istration of Traditional Chinese Medicine, has built the Beijing Digital Museum ofTraditional Chinese Medicine after 5 years of cooperation with Beijing University ofChinese Modern Medicine and Advanced TCM Education, and other well-knownuniversities and research institutes Among the topics included on the website aremedical care, acupuncture, health and life, Qigong17, Tuina18, imperial court med-icine, culture and history, cosmetic treatment, education, science and technology,and international cooperation
Medi-The website covers Traditional Chinese Medicine as well as the philosophy and
Qi Kung19, which are all related to health and well-being of mankind It also has adatabase that includes thousands of different kinds of herbs, specifying their usageand appearance Navigation is easy and self-explanatory It also has good interactivecontent on areas such as Qi Kung and shows videos of various kinds of Qi Kung andwhat they can be used for
This Digital Museum serves as a comprehensive archive and encyclopaedia forChinese medicine and the Chinese way of maintaining health, which has 5000 years
of history and demonstrates the harmony between mankind and nature
Natural treatments are often exploited online, Mamaherb.com20 is an internetplatform enabling users from all over the world to access and evaluate information
on alternative remedies Having become the world’s largest free Natural Healthresource, its goal is to function as a paradigm-changing tool in thefield of alterna-tive—and perhaps all—health-related knowledge Users are able to research, rate,comment on, or discuss particular treatments and thus, with the help of otherassessment tools, such as links to external references, be part of a huge projectwhich aims to assess the effectiveness of natural and alternative treatments.Exploiting the universality of the internet, Mamaherb.com seeks to address twomain issues:“What’s out there?” and “What actually works?”
17 Qigong is a holistic system of coordinated body posture and movement, breathing, and meditation used for health, spirituality, and martial arts training.
18 Chinese traditional massage, often associated with acupuncture and fire-cupping.
19 Qigong is a holistic system of coordinated body posture and movement, breathing, and meditation used for health, spirituality, and martial arts training.
20 Mamaherb (Israel 2009) http://www.mamaherb.com/ no more available on line.
Trang 27If we consider the benefits due to e-Health in the rural areas of emergingcountries, a case study is Sisu Samarakshak21(Child Protector); it aims at makinguse of Information and Communication Technology to improve women’s andchildren’s health through enhanced community monitoring mechanisms ICT can
be used to empower communities and promote inclusion of vulnerable groups,especially of women and the disabled The project offers a comprehensive and anintegrated solution for addressing the needs of the community Sisu Samarakshak ispart of the strategy of information dissemination centres to provide accurate, timely,contextual knowledge to mother and child The knowledge is created forcommunity-based learning and support
Sisu Samarakshak contributes to bridging the gap between high-tech India andthe rural poor The project takes as an example a young woman unaware of her needs
as a new mother; 25-year-old Gunamma did not pay much attention to her healthduring herfirst pregnancy She worked very hard every day and didn’t eat properly.Her child, delivered at home, was a low-birthweight baby Gunamma’s situation isnot unique Despite India’s reputation for high-tech sophistication, almost one third
of the country’s children are underweight at birth—a condition that threatensnew-borns’ chances for healthy growth, and even their survival Across India,UNICEF has invested in placing life-saving knowledge in the hands of mothersand those who work with them
In the southern state of Andhra Pradesh, where about one third of children underfive are underweight, Sisu Samarakshak is helping bridge the gap between high-techIndia and the rural poor Developed by UNICEF22and partners, Sisu Samarakshak(SSK) was piloted in cooperation with the State Government of Andhra Pradesh andHewlett-Packard India The project is one example of how cooperation with thepublic and private sectors23can put the benefits of technology into the service of thepoor, a target of Millennium Development Goal 824
Through computer stations located in their villages, Sisu Samarakshak (SSK)allows rural communities in Andhra Pradesh to access basic childcare information
on topics including care during pregnancy, new-born care, breastfeeding, hygieneand sanitation
Designed with input from rural participants, the messages are relevant and easilyunderstood The program is also easy to navigate through a touch screen or a mouse,
21 Sisu Samarakshak (India 2005) Organisation: United Nations Children ’s Fund, URL: http:// unicef.in/PressReleases/263/Sisu-Samarakshak-receives-the-World-Summit-Award —2005-in-Tunis , last accessed February 2019.
22 Some country-speci fic information was provided by UNICEF country offices or drawn from UNICEF country of fice annual reports.
23 Public Private Partnerships (PPPs) are often active in the field of Health This is one of the reason why we cannot consider Health as 100% public administration; a number of medical facilities are due to PPPs.
24 GOAL 8: Develop a global partnership for development http://www.un.org/millenniumgoals/ 2008highlevel/pdf/newsroom/Goal%208%20FINAL.pdf , last accessed February 2019.
Trang 28and its layout is picture-led and highly graphic with audio guides in several guages, making it accessible to all.
lan-The software program was piloted in 70 locations in Chittoor District In 2005 thedistrict administration installed SSK in 16 villages—reaching out to about 1000women per village Kadapah District, meanwhile, has conducted training for com-munity service providers using the software and is working towards its installation inthe entire district
SSK is already giving community health workers up-to-date information andchanging behaviour.“Nine months back, when SSK was installed in my village, anew world of information and knowledge opened up for me, as well as for the entirecommunity,” said Rama Devi, a voluntary change agent for her village in ChittoorDistrict, in 2005.“SSK has helped change many old myths I held when I was rearing
my children.”
Where SSK is available, more women are also seeking medical consultation.“Weare seeing a sudden increase in rural women now registering themselves in hospitalfor regular consultation with auxiliary nurses,” says Mrs P Geetha, a health andcommunity coordinator in Chittoor.“Over the past 8 months, out of the 37 pregnan-cies in our area, 34 women chose to deliver in hospital.”
In recognition of the simplicity of its messages and ease of navigation, SSKreceived the Manthan Award25 in 2005 in India and the 2005 World SummitAward26in e-Health at the World Summit on the Information Society (WSIS).After this positive pilot, NASSCOM Foundation, supported by NASSCOM(National Association of Software and Service Companies), the leading informationtechnology association of India, started to work with UNICEF to translate SisuSamarakshak into several regional languages
Gunamma can attest to the benefits of using SSK During her second pregnancy, ahealth worker encouraged her whole family to access the program This time, hermother-in-law made sure Gunamma had healthy food and her husband insisted thatshe have the second delivery at the local hospital And the family welcomed ahealthy baby boy, weighing 3 kg
1.5 From Medical Systems to e-Health
The rapid success of the Internet in the 1990s reshaped the previous scenario based
on peer-to-peer modem connections In the beginning, existent experimental cedures and trials were simply“rerouted” on the Internet Very soon experts found
pro-an incredible opportunity pro-and completely new scenario thpro-anks to the increasing set
of Internet technologies The very well-known new opportunities offered by theWorld Wide Web drove a revolutionary vision that led to the birth of a new servicesector: e-Health
25 Manthan Award http://manthanaward.org , last accessed February 2019.
26 World Summit Award https://www.worldsummitawards.org , last accessed February 2019.
Trang 29The term e-Health includes all the previous applications and technologies but itmeans even additional services directly delivered to the citizens One of the majorcharacteristics of this new environment was the feeling of a more patient-centricconcept of healthcare The shift from technology serving medical doctors in caringfor patients to new technologies providing direct support to the patients had and stillhas a positive impact on citizens Let us simply take into account unified bookingcentres and administration; thanks to multimodal access points (phone, Internet,SMS, etc.) citizens may access medical services in a more rapid, efficient and eveneconomic way Healthcare institutions, on their own side, may benefit thanks toCRM27, ERP, and various database and optimization procedures.
If we consider as relevant in thisfield the trust relation between patients/citizensand the healthcare institution, a tight connection and timely personalized informationflux from the institution to the citizen is surely one of the first steps in order toachieve the goal So far SMS or email messages as a reminder for a visit or exam orsimply providing operational instructions before any interaction with the institutionare probably appreciated
The whole bureaucratic procedure related to exams, from the reservation phase tothe delivery of the results if implemented on-line, may save considerable amount oftime and resources on both sides From the patient perspective this means less timedevoted, not needing to ask for one or more permissions at the working place, notransportation fees, etc Some hospitals evaluated the overall economic benefits byfinding a significant advantage for both the hospital and the community Moreover,the implementation of patient medical folders28 accessible, with some limitationsdue to privacy, on the Internet in a multi-language environment is usually considered
an added value service Two main benefits are: the availability of the medical folderall over the world, appreciated by travellers, and the opportunity to save and accessthe full set of information related to an exam, not only that chosen on thefly29
.Citizens usually perceive a major part of such services positively; there are ofcourse some drawbacks in the implementation of similar applications One of thefirst problems we face in implementing medical information systems is the lack offlexibility compared with handmade procedures Additional troubles are caused bythe rigid and traceable sequence of inputs and the enforced definition of responsi-bilities Due to similar reasons it is easier to start from“off line” medical folders andhistorical data than open folders
The successful implementation of e-Health solutions, including the deployment
of an interoperable electronic health record, may, in principle, reduce the costs andimprove the quality of medical care Cost reduction may include:
27 CRM, Customer Relationship Management; ERP, Enterprise Resource Planning.
28 E.g ULSS 8 Asolo on line Medical folder https://servizi.ulssasolo.ven.it/Fpaweb/index.aspx , last accessed February 2019.
29 This happens mainly in medical imaging; images captured by medical machinery that are not relevant for the speci fic problem are discharged (e.g X-ray, CT, MNR, etc.); the electronic patient folder provides the opportunity to store all of them for future bene fit.
1.5 From Medical Systems to e-Health 13
Trang 30• Innovative and better front office including different communication channels(mobile phone, Internet, voice, etc.), automatic resource optimization, automaticpatient alerts, reminders and instruction;
• Improved and automated workflow both on the medical side and administrativeside;
• Reduced expenses associated with record keeping (filing and retrieving based documents), easy document sharing among different offices and units;
paper-• Reduced number of visits required, service delivery on the Internet30, includingthe availability of the full medical folder online in case of need even abroad.Among other implementations of the shared medical folder we can refer to theCatalonia Shared Medical Record (Spain 2009) and Citizen’s clinic archive: Indi-vidual clinical portability (Italy 2007); and to integrate the European scenario we caninclude Internet access to patient healthcare information (izip)31 (CzechRepublic 2005)
Screenshot from Catalonia Shared Medical Record website
Catalonia Shared Medical Record32 is a database which seeks to maximise thequality of healthcare services by making available information on patients fromCatalonian care centres Selection and visualization of specific registers of
30 If possible —e.g exams’ results, on line medical images, on line medical folders, etc.
31 Internet access to patient healthcare information (izip), Organisation: IZIP spol s r.o, http://www izip.cz
32 https://web.gencat.cat/ca/temes/salut/ , last accessed February 2019.
Trang 31information regarding the patient’s medical history and care is carried out by abrowser that can be accessed by health professionals and patients alike The basicprinciple of the initiative is to allow an information exchange among different healthorganizations in order to facilitate and potentiate continuity of care, and to speed updiagnostic procedures by avoiding the repetition of unnecessary examinations.Citizens have access to their own clinical history via a personal digital certificate,and professionals through a federal certification system Providing greater access torelevant information and better communication among professionals, the SharedMedical Record has the potential to save valuable time, money, and more impor-tantly, lives.
Citizen’s clinic archive: Individual clinical portability (Portabilità ClinicaIndividuale PIC) is promoted by the Medical Unit 8 of Asolo33 as“Health in thepocket”, that is to give citizens full cognitive autonomy of their health data, produced
by diagnostics and treatments: this is the set of services provided by PIC
It is a web function that puts in the person’s pocket in real time both textual andmedical imaging data of the assessments and therapies received with admission, anoutpatient performance, a screening intervention, or an emergency action in theemergency room PIC is the individual clinical archive updated and accessibleeverywhere and every time, with a personal security device to guarantee the privacyneeds PIC can be read in four languages (Italian, English, German, French) thanks
to both its interface and the World Health Organization34 international coding ofdiseases, to effectively accompany the person in other countries, for consultation byforeign doctors and at nursing places
Internet access to patient healthcare information (izip)35 is the Czech Internetplatform to access medical folders The IZIP platform was activated in 2005 andre-shaped as ZDRAVEL in 2017 to provide better services
Files accessible through the Internet Access to Patient Healthcare Informationproject contain all necessary information about the state of a patient’s health and areaccessible from any computer connected to the Internet Information can be accessed
by the patient or the doctors she/he gives permission to Only healthcare workersregistered in the IZIP system can update medicalfiles After registration, a patientreceives an access code, known only to her/him After initial registration (activa-tion), she/he is able to access and read her/his medical file Doctors and otherhealthcare workers can access these medicalfiles, too, once they have been givenpermission
The IZIP electronic health book clients have been able to use the new ZDRAVELsystem since September 4, 2017 All data from the IZIP platform was preserved andtransferred to the ZDRAVEL system during the last quarter of 2017 The new system
is accessible atwww.zdravel.cz
33 https://www.ulssasolo.ven.it/ , last accessed February 2019.
34 http://www.who.int/en/ , last accessed February 2019.
35 Internet access to patient healthcare information (izip), Organisation: IZIP spol s r.o, http://www izip.cz later on accessible at www.zdravel.cz , last accessed February 2019.
1.5 From Medical Systems to e-Health 15
Trang 32Summarizing potential quality improvements:
• Real-time information transfer and access thanks to intranet, extranet, andInternet;
• Availability and access, even from abroad, of a more complete and accurate set ofmedical data (patient folder), including documentation and medical images(e.g CT36and NMR scans or X-ray images) usually discharged by the specialistsbecause they are not strictly related to their specific needs (but they are potentiallyrelevant later on);
• Fewer dangerous medical mistakes resulting from poor handwriting or otherorder entry errors (this seems to be one of the most frequent causes of danger);
• Improved medical decisions through the use of structured data mining thanks tothe creation of “ad hoc” ontologies and specific tags This enables us to linktogether information related to the vast databank of historical medical foldersproviding an incredibly huge long-term knowledge base feeding health caredecision support systems;
• Easier quality assurance and statistical data extraction
This is simply a short list of both cost reduction opportunities and qualityimprovement tools; many other aspects will be pointed out in specific sections ofthe book (social, cultural, etc.)
1.6 From e-Health to m-Health
Mobile and portable devices are entering the Health world from both sides: medicalside and patient side Health organisations are tailoring their own e-Services in order
to be accessible from mobile devices and take maximum advantage from this.Remote monitoring of long-term disease is more often offered to patients Thisenhances the trust relationship between the patient and the health organisation;s/he is 247 under control and this cuts the need for patient and physician tophysically meet each other, saving time and resources
Special wearable devices, e.g wristwatches, are created for patients sufferingfrom chronic diseases and elderly people in order to continuously monitor their vitalparameters, actual location and even stance They are equipped with global posi-tioning systems, accelerometers, light sensors, blood pressure meters; heartbeatmeters, skin humidity meters, wireless connections and more m-Health is manytimes overlapping with the fitness and wellness sector The number of wearabledevices and applications in these sectors is growing at rapid pace Smart phonesequipped with specific APPs act as hubs that collect data from the different devicesand sensors The use of health or wellness APPs has a strong relation with privacyissues; when we install such APPs we agree on some requests concerning the
36 Computed Tomography, Nuclear Magnetic Resonance.
Trang 33collection and storage of our personal data, including some of them closely related toour health or lifestyle37; these data, if not explicitly allowed, cannot be used for anyother purpose than the one we prescribed38.
As a natural evolution of service provision, the additional shift from e-Health tom-Health led to the multi-channel and cross-channel access to the services Elderlypeople may prefer to go to the front desk or use the telephone; other patients mayaccess the services mixing up telephone and internet or mobile APPs The use ofmulti-channels in order to provide health services is very usual Of course, the healthplatform must be designed in order to allow such aflexibility in input and output,allowing users to start a procedure on a specific channel and continue the procedure
on a different one, always ensuring the required level of privacy and cybersecurity
As an example of a mobile health system, we can consider EPI Life39 EPI Life isthe world’s first mobile phone with integrated ECG (electrocardiogram) and healthmonitoring functions Although portable ECG monitors have been in the market for
20 years or more they lack either the convenience and simplicity in operation or themeans to provide timely feedback to the user Through the convergence of mobileand medical (cardiac) technology, EPI Life has suitably addressed both these issues,offering a truly portable, easy-to-use ECG monitor with timely feedback to the uservia SMS Now, wherever they are, users will be able to know their current heartcondition within minutes of recording and transmitting an ECG EPI Life allowsusers to record their ECG simply by touching the sides of the phone with theirfingers, eliminating the need for complicated electrodes or messy gels EPI Life alsoallows the user to input key health parameters such as Blood Glucose, BloodPressure and Cholesterol, and to transmit these data to their online Personal HealthFolder, which can be accessed by the user via the Internet ECGs are sent to EPI’s24-hour Health Concierge from the device via mobile connection, where qualifieddoctors and cardiac technicians compare the ECG against the user’s baseline ECGand respond via SMS based on the results of the comparison EPI Life, coupled withthe 24-hour Health Concierge and online Personal Health Folder, offers remotehealth monitoring, allowing the end-users to have timely feedback on their heartcondition anytime, anywhere The ability to detect heart rhythm abnormalities at thepoint of symptom/discomfort means that‘warning signs’ that may result in a fatalcardiac event will never be left unnoticed Timely feedback on the ECGs sent alsomeans that users are able to make informed decisions on their next course of action,
be it visiting the hospital emergency department or the nearest 24-hour clinic Thehighly scalable technology allows medical coverage to be extended into remote areaswhich have little or no access to medical services, making it perfect for rural healthprograms
37 E.g Weight, heartbeat, steps per day, diet and more.
38 Please refer to the paragraph concerning privacy for an in-depth approach to privacy issues.
39 EPI Life (Singapore 2011), Producer: Ephone International (S) Pte Ltd, Mr Adrian Lee, http:// www.headhunt.com.sg/employer-pro file/2649-epi-mobile-health-solutions/ , last accessed February 2019.
1.6 From e-Health to m-Health 17
Trang 34The success of EPI Life encouraged further development of the concept, so EPIhas progressed in efforts and has developed a new generation of ECG devices thatworks with smartphones to enable remote health monitoring.
Leveraging on its innovative technology and development capabilities, a generation product, EPI Mini, was created It is a revolutionary mobile healthmonitoring device that connects to a user’s smartphone via Bluetooth and enablesinstantaneous recording of ECG and tracking of other health parameters Simple touse, EPI Mini is designed for any person to record his heart rhythm anytime,anywhere, simply at the touch of hisfingers On top of having the existing features
second-of EPI Life, the EPI Mini also allows up tofive registered users
1.7 Archiving Electronic Patient ’s Folders
In the previous paragraphs we outlined the increasing success and need of e-Healthand m-Health and specifically electronic patient records and digital patient medicalfolders We explored the relevant benefits, consolidation of medical data comingfrom different sources, potential universal direct access, the potential implementa-tion of artificial intelligence and machine learning procedures to analyse historicalpatient folders in depth to extract useful information, the richness and completion ofthe data set, and long-term accessibility We must take into account some drawbackssuch as, among the others, the risk of privacy infringement and data loss In addition
to these, the friction of staff in the implementation of strict dataflow procedures thatoutline the key responsibilities in the detection of the disease, assigning appropriatetreatment and timely administration of drugs
Taking into account the above-mentioned drawbacks we will discuss the oneconcerning privacy infringement in the specific paragraph of this book; the risk oflosing data is instead the key topic of the present paragraph
In the huge and variegated scenario of digital preservation, this is the term thatidentifies long-term preservation of digital archives; patient folders used to have avery special and probably unique attribute: they could be accessible forever Unfor-tunately, we don’t know much on the autopsy examination of Julius Cesar but wecan consult the medical record of Napoleon to relaunch the thesis of murder.This is merely a question of proper conservation of physical archives all over theworld if we deal with physical documents (documents, prints, images) On thecontrary if we have the right to turn physical archives into digital archivesdischarging physical originals, this is not possible, in many countries, without anexplicit approval by authorities; we immediately face the problem of long-termpreservation of digital documents
Hospitals and health organisations are interested in the optimisation of physicalarchives; this sometimes means even reduction of the built surface devoted to hostthe archives Digitisation seems to be an optimal approach but wisdom suggestskeeping the physical original in a safe“dead archive” Old hospitals used to hostkilometres of paper, hand written, representing the historical archive of the patients,
Trang 35their pathologies, and cures The shift from traditional to digital patients’ folder can
be performed according to different schemas: from scratch, when the whole set offolders hosted by the unit is turned into digital format; only active patients’ foldersare turned into digital without any other archiving support; any other combination oftime and archiving protocol with or without preserving of the traditional archive.Thefirst approach to digitisation of archives enables the creation of a compre-hensive medical history of the geographic area served by the hospital If thedigitisation of the paper-based archive is carried out to maximise benefits, thatmeans not only storing the digital image of each page but also storing the textualcontent of the page, tagged according to a specific ontology suitable for the medicalfield; we will then be able to use data mining algorithms and artificial intelligence toextract interesting data concerning pathologies and cures and follow-ups
In a less risky environment the traditional archive, at least the historical one, ispreserved and stored in a specific repository, protected by fire, water and other mainrisks In the general framework of innovation, the repository can be equipped withtechnological infrastructure that will not only track and manage environmentalconditions but even ease the identification of a specific historical patient folder,keeping costs as low as possible, thanks to barcodes or RFIDs
Once we make the decision to turn our traditional archive into a digital one, asalready stated, we must face the problem of digital preservation40 People used tobelieve (and many still do) that digital formats were the ultimate formats for storinginformation indefinitely The idea that texts, images and, more in general, data can beperpetuated by converting them into digital form is popular and widely supported
As a result, a significant amount of our documents and data rely on digitaltechnology But is digital technology really suitable for long-term preservation?And are electronic devices, which are required in order to access information stored
in digital formats, durable enough to guarantee future access to this information? Ifnot, what can we do to overcome this problem?
The rapid evolution of technology makes the preservation of digital content achallenge Considering the huge amount of data to be stored, including medicalimages due to NMRs, CT scans, etc., the amount of time invested to accomplish thistask, and the length of time that such information needs to be stored41, it is important
to address the issue of the long-term conservation of digital information; a problemthat has largely been underestimated up to now
We need to consider two aspects: technological obsolescence and the temporarynature of“permanent” storage systems Computer systems are aging; the media onwhich information is stored are disintegrating Given this issue, what are the long-term implications of relying on current digital technology to preserve our archives?
40 Uwe M Borghoff, Peter Rödig, et al (2006) Long-Term Preservation of Digital Documents: Principles and Practices, ISBN 978-3-540-33639-6, Springer.
41 The time span is mainly related to the national regulations and data/document type (usually forever).
1.7 Archiving Electronic Patient ’s Folders 19
Trang 36Even if we simply focus, for the moment, on basic digital content such as text,which is usually the main part of the content in a patient’s folder, we cannotguarantee that textual records stored in digital electronic form will always beaccessible Storage media are subject to degradation; they are not designed to survivefor long periods of time as usually required by governments and public bodies.Magnetic and optic technology does not guarantee long-term access to storedinformation; tapes and disks lose their properties and are sensitive to environmentalconditions such as heat, humidity, magneticfields, static electricity, dust, fire, etc.The same happens for solid state digital archives.
In addition, they become obsolete as the devices capable of reading them becomeout-dated and are mothballed Old formats and standards are essentially shelved infavour of newer formats and standards
The same even happens for software standards, because ways of coding mation and the quality of the information stored are constantly improving Thissituation holds for both electronic records converted from already existent analogueforms (paper, medical images, video clips, etc.), and records that were originallycreated in electronic form (as it happens nowadays in medical imaging)
infor-For digital content that is derived from an analogue source, the analogue source(provided it is still available—e.g historical patient folders or temporary paper-based folders) can be digitised again to new and improved standards and formats, sothis issue is not a big problem On the other hand, content that originated in digitalform must be preserved based on the original record (e.g digital imaging, digitalsignal streams, etc.)
Until recently, documents were generally paper orfilm-based42
Film technologywas popular because of its efficiency, usability, and robustness; and we nowrecognise that it is almost hardware-independent
In the 1980s the innovation due to PACS43 and its added value in managingmedical images allowed converting all the analogue images into digital images toenable the centralised management of medical imagery and archival of the full set ofimages generated by the different medical scanners
The life cycle of the data will influence its own creation and will generate anaccounting record for the resources to be preserved Since prevention is better thancure, if we define preservation strategies we are halfway to the solution Thepreservation problem involves several other aspects in addition to the bare techno-logical ones: there are administrative, procedural, organisational, legal, IPR andpolicy issues surrounding long-term preservation of digital content This increasedcomplexity tends to be due to the different natures of digital and traditional physicaldocuments Online information such as web pages and databases are vulnerable, asmuch of their web structure becomes complex thanks to hyperlinks and crossreferences
42 Usually X-rays, CT scans and NMRs, etc.
43 Picture archiving and communication system —centralised management and image sharing.
Trang 37At least one aspect should be investigated before settling on a particular vation approach: the overall cost of preservation This involves considering the bestway to ensure future access to information during the design phase of the long-termdata set This approach may involve some feedback on the way to choose technologyand standards and even the way to shape data sets Once the data set is created, inaddition to infrastructure costs, running costs may include: additional room onstorage devices to archive copies and/or documentation and metadata, softwareapplications that manage data refreshing, and costs related to porting or emulation.
preser-A number of global studies and projects have been and are being carried out indigital preservation; for instance, the work carried out by the Taskforce on Archiving
of Digital Information (94–96) on the mandate of The Commission on Preservationand Access and The Research Libraries Group Inc., as well as the OAIS OpenArchival Information System project, CAMiLEON emulation and the VERS Victo-rian Electronic Record Strategy Along with the ERA initiative launched by NARA,InterPARES I, II and III are some of the most well-known projects in thisfield.Among this set of projects, the International Research on Permanent AuthenticRecords in Electronic Systems (InterPARES)44posed the focus more on authenticity
of records; it aimed at developing the knowledge essential to the long-term vation of authentic records created and/or maintained in digital form and providingthe basis for standards, policies, strategies and plans of action capable of ensuring thelongevity of such material and the ability of its users to trust its authenticity
preser-An additional contribution to a comprehensive vision of electronic record agement was provided by the US Department of Defense standard entitled theDesign Criteria Standard for Electronic Records Management Software Applications(DOD 5015.2 STD)
man-PLANETS45, Preservation and Long-term Access through Networked Services,was a 4-year project co-funded by the European Union under the Sixth FrameworkProgramme to address core digital preservation challenges The primary goal forPlanets was to build practical services and tools to help ensure long-term access todigital cultural and scientific assets Planets started on 1st June 2006 The outcomes
of the project were transferred to the Open Preservation Foundation46
The already mentioned OAIS standard published by both the Consultative mittee for Space Data Systems (CCSDS) and as ISO14721 has been highly influen-tial in the development of digital preservation As a reference model it provides acommon basis for aligning disparate practices in diverse institutional settings Arange of standards have emerged around and related to OAIS, including PREMIS(for preservation metadata), ISO16363 (for certification) and PAIMAS (forexchange between Producers and Archives)
Com-Since OAIS was initially proposed the digital preservation community has growntremendously in absolute numbers and in diversity OAIS adoption has expanded far
44 InterPARES http://www.interpares.org , last accessed February 2019.
45 Planets EU project http://www.planets-project.eu , last accessed February 2019.
46 Open Preservation Foundation http://openpreservation.org , last accessed February 2019 1.7 Archiving Electronic Patient ’s Folders 21
Trang 38beyond the space data community to include cultural heritage, research data centres,commerce, industry and government The digital preservation community has aresponsibility to keep the standard alive and relevant The ISO review of the OAISstandard in 2017 offered a chance for a cooperative, transparent review process Italso creates an opportunity for further community building around OAIS and relatedinitiatives The efforts of the OAIS community focus on the development of aninformation platform around these common vocabularies, concepts, functions, andstandards to cultivate a common view on the state of digital curation andpreservation.
On the occasion of the World Wide Web conference held in New York City in
2004 a specific session was devoted to digital preservation; experts coming fromIBM, National Archive and Record Administration, Keio and other universities andinstitutions outlined the state of the art of this relevant sector of technology deeply
influencing our legacy to future generations In 2006 a similar session, hosted by aHealth Institution, was held in Asolo47(Veneto Region, Italy) with the specific aim
of dealing with digital preservation of medical folders
Finally, it is very important that research into digital preservation be carried out
by strong interdisciplinary groups, since this should guarantee that an effectiveapproach to a problem that concerns the foundations of the digital era is defined
47 E.g The International Expert Meeting “Conservare il digitale”, held in Asolo on 29 September
2006 The report, entitled Long-Term Digital Preservation: An International Focus (see http://www ndk.cz/dokumenty/asolo_memorandum.pdf/download ), was created in order to provide some guidelines and suggestions on this topic —in addition http://www.digitalpreservationeurope.eu/ , last accessed February 2019.
48 Martin Gilje Jaatun, Gansen Zhao, Chunming Rong (edited by) (2009), Cloud Computing, ISBN 978-3-642-10665-1, Springer.
49 According to Gartner, IT spending is moving from traditional hardware and software to cloud computing, Charles Babcock, Gartner Sees $1 Trillion Shift in IT Spending to Cloud, InformationWeek (July 25, 2016), http://www.informationweek.com/cloud/infrastructure-as-a-ser vice/gartner-sees-$1-trillion-shift-in-it-spending-to-cloud/d/d-id/1326372 , last accessed February 2019.
Trang 39If we refer to the definition of Cloud Computing provided by NIST50,National Institute of Standards and Technology, “Cloud computing is a modelfor enabling ubiquitous, convenient, on-demand network access to a sharedpool of configurable computing resources (e.g., networks, servers, storage, appli-cations, and services) that can be rapidly provisioned and released withminimal management effort or service provider interaction This cloud model iscomposed offive essential characteristics, three service models, and four deploy-ment models.”
Thefive essential characteristics of cloud computing as identified by NIST are:
1 On-demand self-service A consumer can unilaterally provision computing bilities, such as server time and network storage, as needed automaticallywithout requiring human interaction with each service provider
capa-2 Broad network access Capabilities are available over the network andaccessed through standard mechanisms that promote use by heterogeneousthin or thick client platforms (e.g., mobile phones, tablets, laptops, andworkstations)
3 Resource pooling The provider’s computing resources are pooled to servemultiple consumers using a multi-tenant model, with different physical andvirtual resources dynamically assigned and reassigned according to consumerdemand There is a sense of location independence in that the customer generallyhas no control or knowledge over the exact location of the provided resources butmay be able to specify location at a higher level of abstraction (e.g., country,state, or datacentre) Examples of resources include storage, processing, mem-ory, and network bandwidth
4 Rapid elasticity Capabilities can be elastically provisioned and released, insome cases automatically, to scale rapidly outward and inward commensuratewith demand To the consumer, the capabilities available for provisioning oftenappear to be unlimited and can be appropriated in any quantity at any time
5 Measured service Cloud systems automatically control and optimize resourceuse by leveraging a metering capability51at some level of abstraction appropri-ate to the type of service (e.g., storage, processing, bandwidth, and active useraccounts) Resource usage can be monitored, controlled, and reported, providingtransparency for both the provider and consumer of the utilized service.The concept of the cloud is, thus, tied to the transferring of responsibilities fromone party to another Still referring to the NIST definition, the three service models,
as already mentioned, are:
50 Peter Mell, Timothy Grance (2011) The NIST De finition of Cloud Computing https://csrc.nist gov/publications/detail/sp/800-145/ final , last accessed February 2019.
51 Typically this is done on a pay-per-use or charge-per-use basis.
Trang 40(a) Software as a Service (SaaS) The capability provided to the consumer is to usethe provider’s applications running on a cloud infrastructure52 The applica-tions are accessible from various client devices through either a thin clientinterface, such as a web browser (e.g., web-based email), or a program inter-face The consumer does not manage or control the underlying cloud infrastruc-ture including network, servers, operating systems, storage, or even individualapplication capabilities, with the possible exception of limited user-specificapplication configuration settings.
(b) Platform as a Service (PaaS) The capability provided to the consumer is todeploy onto the cloud infrastructure consumer-created or acquired applicationscreated using programming languages, libraries, services, and tools supported
by the provider53 The consumer does not manage or control the underlyingcloud infrastructure including network, servers, operating systems, or storage,but has control over the deployed applications and possibly configurationsettings for the application-hosting environment
(c) Infrastructure as a Service (IaaS) The capability provided to the consumer is toprovision processing, storage, networks, and other fundamental computingresources where the consumer is able to deploy and run arbitrary software,which can include operating systems and applications The consumer does notmanage or control the underlying cloud infrastructure but has control overoperating systems, storage, and deployed applications; and possibly limitedcontrol of select networking components (e.g., hostfirewalls)
Since the re-discovery of the network as a powerful means enabling newapproaches and solutions in the field of computing Early in the 1990s after thefirst approach to the world wide web it was the time of software as a service mainlyapplied to downloadable applications running on clients with a pay per use formula;another approach tightly connected with Java environment was net-computing,based on the paradigm of dummy portable computers connected with the Internet
in order to download licensed applications every time they are switched on, savingoutputs remotely on the Internet Unfortunately, at that time network bandwidthwasn’t enough to enable these approaches world-wide
Super-calculus centres and important network nodes were looking for additionalbusiness to balance the lost one of super-calculus services and remote terminalsservice provision; some of them found as an interesting opportunity Internet accessprovision, email service, web hosting and, later on, cloud computing Some of these
52 A cloud infrastructure is the collection of hardware and software that enables the five essential characteristics of cloud-computing The cloud infrastructure can be viewed as containing both a physical layer and an abstraction layer The physical layer consists of the hardware resources that are necessary to support the cloud services being provided, and typically includes server, storage and network components The abstraction layer consists of the software deployed across the physical layer, which manifests the essential cloud characteristics Conceptually the abstraction layer sits above the physical layer.
53 This capability does not necessarily preclude the use of compatible programming languages, libraries, services, and tools from other sources.