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© 2001 Schattauer GmbH
Opinion Paper
Ethical Problems in Health Information Systems
J.-M. Fessler, F. Grémy
Summary
Objectives: To introduce term and concept of
infoethics and to argue on its importance for health
information systems.
Methods: To argue about our viewpoint of the
dominance of the human component, which has been
discussed at an IMIA working conference held in
Helsinki, Finland (February 1998) devoted to the
evaluation of health information systems.
Results and conclusions: Any technology sets a
relationship between human beings and their
environment, both physical and human. No technology
can be seen as merely instrumental. This is especially
relevant when dealing with large automatic information
systems, developed to contribute to the management
and integration of large organizations, such as hospitals.
In such a context, the environment is mainly made up
of humans. In evaluating such information systems,
human factors preside over merely technical factors.
Even if satisfying the latter is mandatory, they are
never really sufficient. A perfect hard- and software
system can be an absolute failure in everyday use. In
any information system, the human factor is, of
course, human-computer interaction, which always
occurs when one person interacts with the machinery.
However, in a simultaneous multi-user context,
human-human interaction is the main question to
tackle. The evaluation of large information systems,
such as those found in hospitals, is founded in the
whole concept of inter-human relationships which
underlie the design and use of the system. Indeed,
such an information system predominately appears as
a social system, with its psychological, sociological
and ethical features.
Keywords
Health Information Systems, Hospital Information
Systems, Ethics
Method Inform Med 2001; 40: 359–61
1. Ethics and Infoethics
Any large human organization implies that
numerous people and diverse categories of
personnel “work together”. In the special
case of healthcare organizations (either
hospitals or health care networks, such as
managed care organizations), “multiplicity”
and “multi-professionalism” are keywords.
The collective characteristic implies the
definition and respect of common aims,
rules of living, duties, and rights. In this
sense, primarily ethics leads to such defini-
tions and respect. According to Emmanuel
Levinas, a major French philosopher of the
20th century, ethics is at the roots of philo-
sophy (“la philosophie première est une
éthique”).
Within health organizations, informati-
on systems, overall, are built to exchange
relevant information in order to deal with
diverse activities, such as delivering the best
possible patient care, as issued by the popu-
lation it is supposed to be serving, in the
present and future. The information system
must contribute to organizational decisions,
such as medical decisions, management
decisions for the daily routine, and strategic
decisions for long-term evolution. In this
sense, information systems represent
integration tools and serve the coherence of
the institution.
It then becomes obvious that the design
and use of information systems deserves a
specific ethical reflection, and that it is not
unreasonable to introduce the concept and
word “infoethics”.
2. The two Levels of Infoethics
The ethics of information should be consi-
dered at two levels:
1. The kind of human relationship that
exists in any information system,
whatever its content, in any enterprise,
provided that people are linked to and
through pieces of equipments, hard and
soft.
2. Among enterprises, or institutions,
healthcare organizations have an
additional human dimension: they are
human service organizations, aimed to
(literally) change human beings. Due to
this specificity, people are part of
corresponding information systems, or,
following the health objective, fragile
people.
Let us examine these two dimensions.
2.1 Ethical Problems of any
Collective Information System
Any information system can be a cause for
conflicts, or even a possible source of
violence. In fact, all choices made in a
collective information system depend on
the concept that decision makers have of
the kind of relationship that exists between
users, both among themselves and with the
managers. These social, ideological and
cultural choices have an ethical background:
sharing of duties and the rights among
personnel members, in accordance with the
general objectives of the enterprise.
When an information system is designed
by one category of professionals, a consi-
derable risk exists that it will be designed
for them, ignoring the goals and interests of
the others. This is especially the case in
medical information systems, but even
more so, in management information
systems.
Among others, the following items are
potential sources of debates and conflict:
Method Inform Med 4/2001
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Fessler, Grémy
● definition of information system objec-
tives,
● selection of relevant information to
reach those objectives,
● consensus about their signification,
● selection of indicators to be computed,
● possible biases about their interpretation,
● rigidity of the information system, which
prevents users from making it larger and
richer.
Each of these items may ignite a struggle
for power. Consequently, this very often
leads to a denial of the necessary multi-
professional approach.
International experiences show the
possible consequences of an unfairly
designed, “violent” and unethical information
system: If an information system is based
on an incomplete and twisted model of the
institution, it may not be accepted or
recognized by a significant part of the
personnel.
● They resent, and are frustrated by,
the inequality between “info-rich” and
“info-poor”.
● They lose faith in the information
system.
● The quality of entered information
decays.
● They feel increasingly unconcerned and
lose their creativity.
● Finally, the failure of the system
becomes obvious.
Meanwhile, managers are fed biased infor-
mation and release a “wooden discourse”
about the institution, in other words, a
simplified description very far from the
complex reality.
2.2 Specific Ethical Problems Facing
Health Care Information Systems
In such systems, people are the information
content, especially fragile and underprivileged
people. According to John Rawls’ “Theory
of Justice”, the rights due to any human
must be expanded when underprivileged
people are at stake. The consequences of
this statement for health care information
systems seem to be the following:
Method Inform Med 4/2001
a) Just as the entire institution, its informa-
tion system must be designed and built
according to the idea that “the patient
and the quality of his/her care are the
center”. That they are ordered around
the process of diagnosis, prognosis,
therapy and follow-up of individual
patients. That is the back bone of the
information system. All of the rest –
medical research, management informa-
tion – must be derived from it.
b) The demand for confidentiality, which is
of course very strong, is just one of the
numerous ethical problems of a health
care information system.
3. How can the True Ethics
of Information in Hospitals
and other Health Care
Organizations be Ensured?
The following recommendations concern
both levels of infoethics. The reason is,
infoethics research is only part of the general
quality research of an institution, which is
itself the result of an ethical demand.
The first key to quality is the shared
conviction that a collective information
system is primarily a tool for social coherency
within the institution.
The second key is true democratic debate
among all concerned actors. Such debate is
democratic both by the transparency of its
content, as well as by the confident way in
which it is conducted. It implies multi-
professional brain storming and thinking to
define, accept, and implement objectives
collectively. Also implied are common
semantics, the timing of the specific aims
which are to be fulfilled successively, the
rights and duties to access treatment
results, and the rules of interpretation. Such
a final agreement could not be obtained
without mutual respect between the actors:
to be seen as people, professionals, and
competent. Also, such an agreement could
not be obtained without frank and fair
discussions. Indeed, nothing reliable can be
achieved without a sufficient level of “a
priori” mutual confidence.
A third key is the common conviction
that all have a common obligation that
transcends their respective professional
ambitions, to build a patient centered
institution in which the quality of care,
respect toward the people, and consideration
for the demands and wishes of the patients
are the permanent, simultaneous concerns
of every actor. (Patients are so often required
by the professionals to adapt themselves to
the imposed rules of the institution without
debate.) Obviously, these collective concerns
of the institution as a whole have a significant
impact on the design of the information
system.
Some specific tools which may be helpful
in fulfilling the recommendations are:
● audits,
● centers of guidance for good information
practice,
● issuing ethical charts,
● committees for infoethics to solve
concrete cases,
● organized forums on the net,
● models anticipating future problems.
4. Conclusion
In conclusion, in communally managed
organizations, the location of information
(in the scientific meaning of the word) is of
considerable importance.
An information system is essentially
valuable through the relationships it creates:
information is the symbol, the key and the
condition of human interaction. Symbol,
since information facilitates exchange in a
useful manner, key and condition, since the
community wants to explore new represen-
tations and answer new questions.
On the contrary, however, information
may be a nuisance if it represents a vector
of the will of domination, and becomes a
screen against transparency.
An ideal (efficient and open) health
information system should contribute to
the germination of intelligence, in a context
of liberty.

References
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Correspondence to:
Prof. Dr. Francios Grémy
17, chemin de l’Escalette
F-30700 Uzes
France
E-mail: Francois.Gremy@wanadoo.fr
Method Inform Med 4/2001