Ehealth-Chapter1 RB MN
Ehealth-Chapter1 RB MN
Ehealth-Chapter1 RB MN
Introduction...................................................................................................4
E-health.........................................................................................................5
1.1.Definitions......................................................................................................5
1.2.Impact and importance of e-health................................................................8
1.2.1.Economical benefits...............................................................................10
1.2.2.Health care benefits...............................................................................11
1.3.E-health initiatives in Europe........................................................................13
1.4.E-health initiatives in Belgium......................................................................17
2.Electronic Health Records (EHR)..............................................................24
2.1.Definition......................................................................................................24
2.2.Aspects of EHRs...........................................................................................26
2.2.1.Role of the patient in the EHR................................................................26
2.2.2.Core function of the EHR........................................................................27
2.2.3.Standards for classification and nomenclatures.....................................28
2.2.4.Data integrity and security.....................................................................31
2.2.5.Interoperability.......................................................................................31
Introduction
Within the context of this work the terms e-health (also ehealth or electronic
health) and EHR (electronic health record) will be frequently used. For these
concepts, many, sometimes confusing definitions exist. Obviously it is very
important that the reader gets a clear understanding of what is meant by the
concepts e-health and EHR within the scope of this work. In this first chapter
the different aspects of the terms e-health and EHR are highlighted, thereby
defining the environment and context in which this work has been
performed.
In a first part of this chapter, e-health is handled in detail. We will discuss the
development of e-health definitions in detail and emphasize on the
particularities of the different propositions. In a next part the impact, both
economically and concerning the delivery of care will be dealt with.
Additionally the current status of the work that is performed in Europe in this
domain with a highlight on to the situation in Belgium is presented {see note
1 on literature search}.
{note 1} The literature search for this part of the chapter was performed in
different steps . First by a “Medline (Pubmed)” search, using the keywords:
e-health (102), ehealth (74 hits), electronic health (320), with the following
limits (abstract available, published the last 5 years, English, word in title).
We emphasize that until today, no Medical Subject Heading (MeSH)
taxonomy exists. These articles were checked manually. In a second step,
the reference lists of important recent reviews were used to find other
interesting articles. Finally, reports of European projects (via projects
websites) as well as conference proceedings were used as valid information
sources for information concerning e-health.
In a second part of this chapter, the general concepts of the EHR are
detailed. Again we will start by defining the concept and we will elaborate
briefly on the EHR initiatives in Europe and Belgium. Special attention is
given in this part to some crucial aspects, such as interoperability and
codification standards {see note 2 on literature search}.
{note 2} The literature search for this part of the chapter included again
different levels. First a “Medline (Pubmed)” search was performed, using the
following limits (abstract available, published the last 5 years, English). The
Mesh keywords “Medical Records” (+1400) and "Medical Records Systems,
Computerized" (+500) led to too many hits. These mesh keywords were
combined in a second stage with “Physicians, Family” (Mesh) and “Physical
Therapy (Specialty)”. Further combinations with non mesh keywords (with
additional limits such as “title word”) were performed. Additionally,
pertinent information was drawn from the reference lists, cited in the
review articles, found in the previous search as well as reports from different
projects, via the projects websites.
E-health
1.1. Definitions
What is e-health? Many have already tried to answer this question. Gunther
Eysenbach, editor of the Journal of medical internet research stated in his
2001 editorial titled “What is e-health?”: “The term e-health was barely in
use before 1999, but now this term seems to serve as a general "buzzword,"
used to characterize not only "Internet medicine", but also virtually
everything related to computers and medicine [1]. The situation has only
become more confusing since then. In 2005 a review was published by
Pagliari and colleagues [2] that included 36 different definitions for the term
e-health. The authors state that the term is not immediately discernable
from that of the wider (medical) health informatics field.
This is, amongst others (as stated earlier no correct keyword, such as Mesh),
a very important reason for the confusion and lack of appreciation regarding
the research domain. Therefore terms such as “medical informatics”, “health
informatics”, “telehealth” and “telecare” are all domains that have a large
overlap with what is generally considered as e-health. This characteristic of
the e-health domain makes unambiguous and well structured (literature)
searches extremely difficult. They usually result in too broad and unspecific
conclusions.
The list of Pagliari (2005) [2] was even extended by Oh et al. (2005). In their
review article bearing again the same title “What is eHealth?” an exhaustive
overview of all possible definitions used to describe the terms ehealth, e-
health or electronic health is presented [3]. In total these authors came up
with 51 unique definitions, but conclude that possibly more exist. The
definitions range from very short: “Internet technologies applied to health care
industry” [4], “E-health is all that’s digital or electronic in the health care industry”
[5] or even “Internet related health care activities” [6] to extremely large
definitions as “The most broad term is ehealth, with refers to the use of electronic
technologies in health, health care and public health. (...) The various functions of
ehealth [are]: (...) reference (electronic publishing, catalogues, databases); self-
help/self-care (online health information, support groups, health risk assessment,
personal health records), Plan/provider convenience services (online scheduling,
test and lab results, benefit summaries), Consultation and referral (doctor-patient or
doctor-doctor consultation via telemedicine systems, remote readings of digital
image and pathology samples), E-health commerce (sales of health related product
and services) [and] Public health services (automated data collection, data
warehouses, online access to population survey data and registries, advance
detection and warning systems for public health threats). (...) This chapter uses the
term ehealth to refer to the broadest possible range of interactive technologies
applied to health and health care.” [7].
Other definitions are very specific, and focus on a particular aspect (e.g.
Economical): “E-health – the application of e-commerce to health care and
pharmaceuticals” or sub-domain of e-health (e.g. telehealth or telecare): “E-
health is the process of providing health care via electronic means, in particular
over the Internet. It can include teaching, monitoring (e.g. physiologic data), and
interaction with health care providers, as well as interaction with other patients
afflicted with the same conditions” [8].
In the context of this work, the goal is not to come up with yet another
definition for the term e-health. Neither will we criticize or make remarks on
one of the definitions used by other researchers or institutions, because they
all contain valuable aspects of the large concept of e-health. We clearly
want to emphasize the broad scope of the domain, and we realize that the
content of the definitions is significantly biased by the stakeholders’
perspective on the field. Social insurance companies will have a totally
different view of e-health than commercial software vendors. Hospitals will
have a completely different vision on the concept than independent nursing
practitioners. A summary-overview of the most important aspects of the
numerous definitions discussed in the 2005 review of Oh et al. can be found
in the next paragraph.
From the 51 unique definitions two universal themes health (49/51) and (46/51) can be
identified. Six other less general aspects were used in different definitions: commerce,
activities technology, stakeholders, outcomes, place, and perspectives. In 11 definitions, e-
health was referred to in terms of commerce, suggesting that e-health is “health care's
component of business over the Internet”, the “application of e-commerce to health care
and pharmaceuticals” or as “new business models using technology”. Others associated e-
health with activities such as managing, educating, arranging, connecting, obtaining,
providing, redefining, supporting, using, assisting and accessing. The stakeholders most
often mentioned were health care providers (physicians, health care providers, health care
professionals, health workers, managers, and caregivers). The public is mentioned as public,
patients, consumers, non-professionals, and citizens. Governments, employers, and payers
are also listed as potentially benefiting from e-Health. While most of the definitions
concentrated on the process of care, about one quarter of them focused on the outcomes to
be expected. These definitions mentioned improving and increasing the cost-effectiveness of
health care and making processes more efficient. Others suggested that e-health could
solve problems related to access to care, cost, quality, and portability of health care
services. While the actual word place was not used in any of the definitions, some authors
referred to the concepts of distance, geography, and location. One definition describes the
impact of e-health as local, regional, and worldwide. Another describes e-health as taking
place both at the local site and at a distance. A third suggests that distance and place no
longer remain barriers, as e-health is “to provide and support health care wherever the
participants are located”. Finally, other definitions suggest that e-health represents a new
perspective on health care. One author describes e-health as a “state-of-mind, a way of
thinking, an attitude, and a commitment for networked, global thinking”. Another source
describes e-health as a “consumer-centered model of health where stakeholders
collaborate” (summarized from Oh, 2005 [3])
For us, academic researchers the content of e-health is also very well
described in an article by Jones, R and colleagues, again titled ‘What is
eHealth?’ In this article, using, processing, sharing and controlling information
(data) are considered the key aspects in e-health. All other aspects relate
more to “how the results of this research should be implemented and carried out”
or to “how the improvement in health care can be measured” [9]. The latter are
more important to other stakeholders like end-users, commercial (software)
companies, governmental organizations, social security.
In our research we have always tried to incorporate the ideas and beliefs of
the whole field, by means of user committees and focus groups. This did not
always prove to be the most efficient and fastest way of working, but finally
resulted in technologies where all stakeholders could agree upon and that
are already used in the field.
Is e-health worth it? Why bother to make the switch from paper-based to
electronic communication and data storage to digital applications in health
care? Are all initiatives in e-health research really necessary? Does e-health
save money? Or even more importantly: does e-health save lives? The
answer to these questions is not straightforward, but the different examples
in this paragraph illustrate that e-health really is worthwhile if the
technologies and methods are applied in a carefully planned way. E-health is,
as discussed in detail in the previous paragraph, a very complex domain. It
consists not only of different professional approaches, uses numerous
technical building blocks, but also has to deal with the legal framework and
the “goodwill” of the end-users. The complexity and wide variety of e-health
applications makes it almost impossible to measure the impact of e-health
on the modern health care systems, but in this paragraph we will try to give
some answers, based on some real-life examples.
The “Aho” report (January 2006 [12]) explicitly acknowledged the importance
of ICT in tackling specific challenges within the health care sector, and thus
identified e-health as an example of a key area where a market for
innovation can operate and public policy can have a significant role.
Consequently, the European Union (EU) commission proposed “the Lead
Market” initiative on e-health aiming at the creation of markets with high
economic and social value, in which European countries could develop a
globally leading role. [13] “The Lead Market” initiative was about identifying
example areas with the greatest potential to the European economy. It was
not about artificially creating markets for research results, but creating an
environment that enables industry and academic institutions to develop
innovative products and services. For the EU commission the e-health
market can be defined as comprising the following four inter-related major
categories of applications:
a. Health education
c. Support systems
E-health is becoming a mainstream element of national health system
priorities. This is shown by the fact that virtually all EU member states
feature by now e-health strategies in dedicated documents or as a part of
wider e-Services. Most of these documents have been published since 2003.
However, some countries such as Denmark, as will be discussed in the next
paragraph already adopted initial e-health policies during the 1990’s.
The health sector in the European Union employs almost 10% of the total
workforce and corresponds to almost 9% of the gross domestic product
(GDP) (in 2006). Health spending is rising faster than the GDP and is
estimated to reach 16% of the GDP by 2010 in OECD1 countries. The e-health
industry in the EU was estimated to be worth close to € 21 billion in 2006.
This figure covers the four previously mentioned areas in the e-health
market, including ICT infrastructure belonging to the health delivery system.
The major part (almost 80%) of this figure represents generic ICT
infrastructure (networks, communication, hardware, software,…). So e-health
cost a lot of money. But is there also a return of investment? All market
players and observers agree the e-health in Europe is set for an explosive
growth, driven by the need to face health related challenges [14].
One example that clearly illustrates the possible economical benefit from e-health is
Medcom, the Danish Health Data Network [11]. In Europe this is one of the oldest
health care networks, with a start already dating back to the early 1980’s. Medcom
as it exists now is the results of different projects based on new information and
communication technologies in health care, lead by the Danish centre for Health
Telematics, that was founded in the 1990’s. The focus of the projects lies in the
electronic data interchange (EDI) which is used for the messaging process of
electronic data, including referrals, prescriptions, request reports, discharge letters,
notifications and reimbursements.
The economic results of the project are summarized and shown in Figure 1 below
and they clearly demonstrate a financial benefit for the introduction of this e-health
technology.
Some more detailed results are:
• First year of annual net benefit, i.e. when annual benefits exceed
annual costs: 1997, year 3
• Estimated annual net benefit for the year 2008: approximately € 80
million
• First year of cumulative net benefit: 1999, year 5
1
OECD: Organisation for Economic Co-operation and Development (30member countries
worldwide)
• Estimated cumulative benefit by 2008: approximately € 1.4 billion
• Cumulative investment costs, including operating expenditure, by
2008: approximately € 725 million
• Estimated productivity gain, measured in decrease in cost per
message transaction: 97%
• Distribution of benefits to 2008: Citizens – 2%; HPOs – 98%
Figure 1: Present Values (PV) of the estimated annual costs and benefits for Medcom, Danish
Health Data Network. 1994-2008, in € 000s. (from e-health IMPACT study, 2006. The data
after 2006 are estimated number based on the virtual health economy concept of the
IMPACT study [11])
The EU IMPACT study (2006) [11] defines benefit categories along the lines
of the following quality aspects:
• Informed patients and health care providers
• Sharing of information designed to streamline health care processes
• Timeliness (scheduling and providing health care at the right time)
• Safety
• Effectiveness
• Access
• Efficiency
But the real question for health care benefits is: “do these technologies
actually improve the patients’ health-level?” Are there lives being saved?
Does e-health really have an impact on the patients’ health status?
Example:
A study from an e-prescription system from the North-Atlantic region in the US
showed that in 2007, more than 525,000 prescriptions were written electronically.
In addition, nearly 23,000 medication history requests were made, allowing the
physician to review all of the patient’s medications. Reviews of the complete
medication history resulted in prescription changes due to allergy warnings (9
percent), drug-drug interaction warnings (34 percent), duplicate therapy warnings
(36 percent), dose warnings (13 percent) and formulary non-compliance warnings
(22 percent) [28].
This example not only shows economic benefits when using this e-health
technology, but the results confirm that using an e-prescribing system
clearly has a beneficial influence on the patients’ health status. Numerous
allergic reactions and drug-drug interactions would not have been spotted
without the e-prescribing technology.
Although this component of e-health, namely the real effect on the patients’
health status is very difficult to measure, it will become one of the key
aspects in the acceptance and development of e-health systems in the near
future. This is an aspect that not only addresses the patients directly but is
also the primary concern for the health care providers. Therefore it will be
necessary to strictly define the assessment rules and come up with an
inimitable set of criteria on an international (European) level that will be used
to evaluate the efficiency and effectiveness of the e-health systems
regarding the patients’ health status.
E-health initiatives range from very small to very large, from local or regional
to national or even international, although there are not yet many large-
scale national e-health procedures in routine operation. Most undertakings
are at the stage of development, pilots or in larger test phase. Few initiatives
already have gone through a fully functional roll-out. Only the three
Scandinavian countries have already implemented fully operational national
ICT infrastructures. Most EU countries have their e-health infrastructure in
the process of development and schedule the implementation phase in the
years to come.
The EU ERA report provides a detailed report on the priorities and strategies
of the European countries until 2007, and their plans for the future [14]. In
Table 1 you find a summary-overview of the 32 European countries that were
covered by this study. Six major e-health themes were selected:
Infrastructure, electronic health records, interoperability, patients and health
2
Web of Science ©, more info on:
http://www.thomsonreuters.com/products_services/scientific/Web_of_Science
professional mobility, legal and regulatory framework and evaluation and
impact analysis.
Table 1: Overview of e-health initiatives in EU countries until 2007. (Summarized from ERA report EU
Commission, i2010 countries are countries that are not EU-member states, but involved in the EU
policy framework for the information society and media i2010)
a. Infrastructure
3
Semantical interoperability: is the ability of two or more computer systems to exchange
information and have the meaning of that information automatically interpreted by the
receiving system accurately enough to produce useful results, as defined by the end users
of both systems. Will be explained in more detail in paragraph 2.2.5
c. Interoperability
Legal and regulatory frameworks are crucial building blocks for fully
functional e-health infrastructures. Not only for health care
providers but also for citizens are medical data very sensitive
information that should be handled with care. Especially when the
data are available via the network and possibly visible to and
accessible by numerous persons. Citizens are very anxious to know
what is happening with their health information. But many e-health
applications such as EHRs, eHealth platforms, health grids involve
new legal challenges [44]. Therefore in EU countries where
legislation is already implemented or at least under serious
discussion, the introduction of e-health systems will prove to
progress more efficiently.
In Belgium the first e-health initiatives originated from this Ministry of Health
(Dr. J.P. Dercq, Dr. M. Bangels, Director Dr. C. De Coster and colleagues). By
law (Royal Decree of May 3rd 1999) the Telematics commission was created
to coordinate research and deployment actions in the e-health field. In 2008
major changes took place: the e-Health Platform was created (law on e-
Health, Aug. 2008) and the focus of initiatives shifted from the Ministry of
Health to the social security administration (RIZIV / INAMI).
c. IBBT projects
This project that already dates back to the early 2000’s defines an XML
implementation for health related electronic messages. Kmehr-bis (Belgian
Implemantation Standard) is currently considered as the standard for
exchanging health related electronic messages, which are used in many of
the above described e-health initiatives. Amongst these messages are
discharge letters, medical prescriptions and lab-results. More detailed
information on Kmehr can be found in the next chapters. [53]
e. Recip-e [27]
Although all these regional or even national initiatives exist, there still
remains a need for coordination of all these projects, without losing the
original approach and dynamics of the individual programs. Therefore the
eHealth platform5 (formerly Be health) was created based on a shared
basic vision and strategy concerning e-health between all the actors in the
Belgian health care domain. Another important goal of e-health is to create
of platform for technical and semantical interoperability, for quality and
5
eHealth platform: we will use BOLD formatting when referring to the Belgian eHealth
platform. Normal formatting will be used when referring to the general e-health term.
security standards applicable in the whole country. In this model the
eHealth platform has special attention to:
The top layer consists of the added value services. These added value
services are put available for patients and / or health care workers. Examples
of these added value services are as described above: My-Carenet, Flow
projects, the site of the ministry of Health (FOD Volksgezond, veiligheid van
de voedselketen en leefmillieu) and many others as will be described in next
chapters.
The bottom layer stands for validated authentic sources (VAS). These are
basic database that are used by the eHealth platform. The manager of the
database is responsible for the availability and the (organization of the)
quality of the data that is provided. Examples of these databases are the
registry of health care providers (“Kadaster van zorgverleners”) managed by
the Ministry of Helath (FOD Volksgezond, veiligheid van de voedselketen en
leefmillieu), that contains information on diploma and specialty of the health
care providers, identified using his social security number (INSZ6). Another
database is managed by the RIZIV7 and contains information about the
recognition of the health care providers.
The introduction of the eHealth platform has many advantages, not only
for the government, but also for the health care providers as well as for the
patients at large.
Government:
• better policy support
• maximum spending of available budget on care thanks to more efficient handling of
administrative formalities
• singe implementation of-re-usable (basic)services
Health care provider:
• less administrative formalities, more time for care
• better professional support
• one affiliation to the electronic platform suffices for many applications
• support for local and regional cooperation
Patient:
6
INSZ: Identificatie nummber voor sociale zekerheid.
7
RIZIV: Rijksinstituut voor Ziekte- en Invaliditeitsverzekering (http://www.riziv.fgov.be)
• improved quality of the health care and security for the patient
• in some cases, faster delivery of care
• better transparency
Figure 2: Schematical representation of the eHealth platform. AVS stands for Added Value Service,
BS means Basic Service, and VAS is Validated Authentic Source (schematically from e-health
presentation of F. Robben, 2008)
2. Electronic Health Records (EHR)
2.1. Definition
Electronic health records are a major focus for current research in the field of
health informatics and e-health [56, 57]. Most research has been performed
on the possibilities of the current technologies and the underlying
architecture. The EHR is considered to be one of the cornerstones of e-health
as recently confirmed by CEN’s focus group on E-health [58]. In 2006 the EU
commission reports: “achieving a European health record is not yet an
overarching goal, but collaboration on developing individual countries' health
records or basic patient summaries as a first step towards more
comprehensive records appears to be an aim of increasing interest to many
of the Member States”[11]. This last example clearly demonstrates the need
for well organized EHRs. But before one can dream of an EHR at a European
level, we need to agree on what we define as an EHR. And EHR is a rather
“fuzzy term”, as mentioned in the EU report.
As with e-health there exists a wide variety of definitions [59-64]. The list is
more exhaustive in comparison with the e-health definition, due to the
different health care disciplines that all try to define their own EHR. Big
differences exist between primary care and hospital settings or between
family physicians and specialist. Also other health care providers as nurses,
pharmacists, physiotherapists and paramedics use their own domain specific
definition for the EHR.
Despite this wide variety, some very general and standardized definitions are
available, which was not the case for e-health. In 2004, the International
Organization for Standardization (ISO) defined the electronic health record
[65]. According to this definition, the EHR means “a repository of patient data
in digital form, stored and exchanged securely, and accessible by multiple
authorized users. It contains retrospective, concurrent, and prospective information
and its primary purpose is to support continuing, efficient and quality integrated
health care”. This definition, although not very detailed, is very clear and it
describes and contains all the core concepts that are needed to build a well
organized EHR. An adapted version of this definition is also being used by the
openEHR8 project, an open standard specification that describes the
management and storage, retrieval and exchange of health data in EHRs.
8
OpenEHRM www.openehr.org : The openEHR Foundation is a not-for-profit company. Its
founding shareholders are University College London, UK and Ocean Informatics pty,
Australia.
They define the EHR as “repository of information regarding the health status of a
subject of care in computer processable form, stored and transmitted securely, and
accessible by multiple authorized users. It has a standardized or commonly agreed
logical information model which is independent of EHR systems. Its primary purpose
is the support of continuing, efficient and quality integrated health care and it
contains information which is retrospective, concurrent, and prospective” [34, 35].
Many more definitions exist, but in the scope of this work, we do not wish to
give a large overview of all possibilities. For our research work, the definition
of ISO, includes all the necessary elements that are needed in an EHR. We
emphasize the fact that not only EHR is used as a term to describe the
electronic storage of clinical (patient) data. According to the health care
domain, different types of EHRs exist and they are defined using different
concepts. ISO also gives a number of other terms that are frequently used in
the relevant literature, to describe different types of EHRs. This is clearly
illustrated in table 2, which contains the data from a review article from 2008
(from Häyrinen and colleagues [64]), concerning the definitions on EHRs
As already mentioned above, some organizations deal with the topic of EHR.
On an international level, the openEHR-project [34, 35] is one example,
another on a European level is Eurorec [66]. In Europe, 15 countries
including Belgium (7 other applicant countries) each have their own ProRec-
centre, an initiative supported EU commission. These centers provide
services to industry (the developers and vendors), health care providers (the
buyers), policy makers and patients, mainly concerning EHRs. EuroRec is
organized as a permanent network of National ProRec. The EUROREC
Institute (EuroRec) is an independent not-for-profit organization, promoting
in Europe the use of high quality Electronic Health Record systems (EHRs).
One of its main ambitions is to support, as the European authorized
certification body, EHRs certification developments, testing and assessment
by defining functional and other criteria. The topic of certification and quality
labeling will be further discussed in chapter 2.
Table 2: Overview of the types of definitions used for describing EHRs (from Häyrinen et al., 2008 [64])
When developing EHR systems many aspects have to be taken into account.
What is the patients’ role in the EHR (1). What is the core function of the EHR
(2). Which are the standards, codes, nomenclatures and vocabularies that
are going to be used (3). What about data integrity and security (4). Are
these EHRs interoperable with other systems and is data exchange possible
(5) [64]. These aspects can be found in the definitions that are mentioned
above and they are pertinent to our research that will be discussed in the
next chapters.
9
The general medical record of the patient (in Dutch: “Globaal medisch dossier”) is
managed by the family physician in Belgium
Not only the way EHRs are structured is differentiated, also the content
differs according to the health care domain and the scope of the EHR. It is
clear that nurses are interested in keeping other health care data than
physiotherapists, and hospitals store other data than GPs. Many initiatives to
build a solid EHR exist. Unfortunately they are often organized using the
point of view of a specific health care domain, without the broader vision of
the whole sector. These structural disparities between EHRs for different
health care providers, is an important issue when discussing the topic of
interoperability. This topic will be further elaborated in chapter 4, regarding
the exchange of data between electronic medical records and electronic
physiotherapy records. These systems have a completely different approach
for dealing with a health care problem.
Another aspect when dealing with the content of the EHR is the concept of a
minimal needed set of health care data. In different countries these
minimalistic EHRs are already being put into practice, but they differ a lot in
functionality. Some are stored within the hospital information systems,
others like the Sumehr10 in Belgium are kept by the GPs EHR. Other
initiatives even want to store the data on the patients’ health insurance card
[77] Even non-official projects exist, where commercial software companies
encourage patients to store there “minimal” patient record on a memory-
stick or similar devices that they always carry with them.
Next to the medical minimal datasets, there also exist minimal datasets used
in the context of the management and financing of health care institutions
(MKG, MPG)11. Through the coding of diagnosis and treatment in the medical
records (ICPC-coding, used in primary care and DHCP coding in hospitals
{see 2.2.3}), unambiguous exchange of medical information is made
possible. Coding systems enable the extraction of minimal datasets for
epidemiologic studies and for management purposes. The minimal datasets
in their own right fall outside the scope of our work, that is aiming at the
clinical aspects of patient data. Of course the clinical datasets form the
source from which minimal datasets are built.
A GP will try to code / classify a health care problem with a patient at the level
of the disease. For instance a patient comes to the GP with an ankle sprain. This
is classified at the level of the disease. The primary goal of the doctor is to cure
this patient by eliminating the disease . The patient is usually considered as
cured when he/she does not return to the doctors’ office for this health care
problem. However for a physiotherapist, it is necessary that he is able to make
statements not only on the status of the disease but also on the amount of pain,
possibilities of daily life activities etc. This is needed for the therapy planning
and measuring the progress of the patient.
14
ICPC2: more information on:
http://www.who.int/classifications/icd/adaptations/icpc2/en/index.html
15
ICF: International Classification of Functioning, Disability and Health. More info on:
http://www.who.int/classifications/icf/en/
2.2.4. Data integrity and security
When dealing with clinical data, data integrity and security aspects are very
import . Examples are protecting the patients’ privacy [72-73], managing the
authorization rules for accessing the EHRs [85], especially in a shared
medical record situation. Other legal facets of the e-health systems need to
be controlled very carefully to form a solid basis for a good EHR structure.
For example, the patients’ rights to access his own EHR(s), and the list of
accesses by other parties to his medical data, as recommended by the IMIA
working group on security in health information of 2006 [87]
These aspects however fall outside the scope of this work, because they
need an in-depth understanding of the legal structures of the health care-
system.
Although it will not be discussed in detail here, there is one aspect of this
topic that was partially subject of this work: data encryption. It will be
discussed further in chapter 3.
2.2.5. Interoperability
Figure 3: Standardized message exchange between two health care applications, e.g. EHRs
(schematically from Dogac et al. 2007 [80]). Typically, a messaging interface gathers data from the
back-end application systems, encodes the data into a message, and transmits the data over a
network such as a Value Added Network (VAN) to another application. On the receiver side, the
received messages are decoded, processed and the data which have been received are fed into the
receiver’s back-end systems to be stored and processed
16
DICOM: Digital Imaging and Communications in Medicine (DICOM) is a standard for
handling, storing, printing, and transmitting information in medical imaging. More info on:
http://medical.nema.org/
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