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© 2001 Schattauer GmbH

Opinion Paper

Ethical Problems in Health Information Systems

J.-M. Fessler, F. Grémy

1. The kind of human relationship that

Summary 1. Ethics and Infoethics exists in any information system,
Objectives: To introduce term and concept of whatever its content, in any enterprise,
infoethics and to argue on its importance for health
Any large human organization implies that provided that people are linked to and
information systems.
Methods: To argue about our viewpoint of the numerous people and diverse categories of through pieces of equipments, hard and
dominance of the human component, which has been personnel “work together”. In the special soft.
discussed at an IMIA working conference held in case of healthcare organizations (either 2. Among enterprises, or institutions,
Helsinki, Finland (February 1998) devoted to the hospitals or health care networks, such as healthcare organizations have an
evaluation of health information systems. managed care organizations), “multiplicity” additional human dimension: they are
Results and conclusions: Any technology sets a and “multi-professionalism” are keywords. human service organizations, aimed to
relationship between human beings and their The collective characteristic implies the (literally) change human beings. Due to
environment, both physical and human. No technology definition and respect of common aims, this specificity, people are part of
can be seen as merely instrumental. This is especially rules of living, duties, and rights. In this corresponding information systems, or,
relevant when dealing with large automatic information sense, primarily ethics leads to such defini- following the health objective, fragile
systems, developed to contribute to the management
tions and respect. According to Emmanuel people.
and integration of large organizations, such as hospitals.
In such a context, the environment is mainly made up Levinas, a major French philosopher of the
of humans. In evaluating such information systems, 20th century, ethics is at the roots of philo- Let us examine these two dimensions.
human factors preside over merely technical factors. sophy (“la philosophie première est une
Even if satisfying the latter is mandatory, they are éthique”).
never really sufficient. A perfect hard- and software Within health organizations, informati-
system can be an absolute failure in everyday use. In on systems, overall, are built to exchange
2.1 Ethical Problems of any
any information system, the human factor is, of relevant information in order to deal with Collective Information System
course, human-computer interaction, which always diverse activities, such as delivering the best
occurs when one person interacts with the machinery. possible patient care, as issued by the popu- Any information system can be a cause for
However, in a simultaneous multi-user context, lation it is supposed to be serving, in the conflicts, or even a possible source of
human-human interaction is the main question to
present and future. The information system violence. In fact, all choices made in a
tackle. The evaluation of large information systems,
such as those found in hospitals, is founded in the must contribute to organizational decisions, collective information system depend on
whole concept of inter-human relationships which such as medical decisions, management the concept that decision makers have of
underlie the design and use of the system. Indeed, decisions for the daily routine, and strategic the kind of relationship that exists between
such an information system predominately appears as decisions for long-term evolution. In this users, both among themselves and with the
a social system, with its psychological, sociological sense, information systems represent managers. These social, ideological and
and ethical features. integration tools and serve the coherence of cultural choices have an ethical background:
the institution. sharing of duties and the rights among
Keywords It then becomes obvious that the design personnel members, in accordance with the
Health Information Systems, Hospital Information and use of information systems deserves a general objectives of the enterprise.
Systems, Ethics specific ethical reflection, and that it is not When an information system is designed
unreasonable to introduce the concept and by one category of professionals, a consi-
Method Inform Med 2001; 40: 359–61 word “infoethics”. 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
2. The two Levels of Infoethics more so, in management information
systems.
The ethics of information should be consi- Among others, the following items are
dered at two levels: potential sources of debates and conflict:

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● definition of information system objec- a) Just as the entire institution, its informa- A third key is the common conviction
tives, tion system must be designed and built that all have a common obligation that
● selection of relevant information to according to the idea that “the patient transcends their respective professional
reach those objectives, and the quality of his/her care are the ambitions, to build a patient centered
● consensus about their signification, center”. That they are ordered around institution in which the quality of care,
● selection of indicators to be computed, the process of diagnosis, prognosis, respect toward the people, and consideration
● possible biases about their interpretation, therapy and follow-up of individual for the demands and wishes of the patients
● rigidity of the information system, which patients. That is the back bone of the are the permanent, simultaneous concerns
prevents users from making it larger and information system. All of the rest – of every actor. (Patients are so often required
richer. medical research, management informa- by the professionals to adapt themselves to
tion – must be derived from it. the imposed rules of the institution without
Each of these items may ignite a struggle b) The demand for confidentiality, which is debate.) Obviously, these collective concerns
for power. Consequently, this very often of course very strong, is just one of the of the institution as a whole have a significant
leads to a denial of the necessary multi- numerous ethical problems of a health impact on the design of the information
professional approach. care information system. system.
International experiences show the Some specific tools which may be helpful
possible consequences of an unfairly in fulfilling the recommendations are:
designed, “violent” and unethical information ● audits,
system: If an information system is based
on an incomplete and twisted model of the
3. How can the True Ethics ● centers of guidance for good information
practice,
institution, it may not be accepted or of Information in Hospitals ● issuing ethical charts,
recognized by a significant part of the
personnel. and other Health Care ● committees for infoethics to solve
concrete cases,
● They resent, and are frustrated by, Organizations be Ensured? ● organized forums on the net,
the inequality between “info-rich” and ● models anticipating future problems.
“info-poor”. The following recommendations concern
● They lose faith in the information both levels of infoethics. The reason is,
system. infoethics research is only part of the general
● The quality of entered information
decays.
quality research of an institution, which is
itself the result of an ethical demand.
4. Conclusion
● They feel increasingly unconcerned and The first key to quality is the shared In conclusion, in communally managed
lose their creativity. conviction that a collective information organizations, the location of information
● Finally, the failure of the system system is primarily a tool for social coherency (in the scientific meaning of the word) is of
becomes obvious. within the institution. considerable importance.
The second key is true democratic debate An information system is essentially
Meanwhile, managers are fed biased infor- among all concerned actors. Such debate is valuable through the relationships it creates:
mation and release a “wooden discourse” democratic both by the transparency of its information is the symbol, the key and the
about the institution, in other words, a content, as well as by the confident way in condition of human interaction. Symbol,
simplified description very far from the which it is conducted. It implies multi- since information facilitates exchange in a
complex reality. professional brain storming and thinking to useful manner, key and condition, since the
define, accept, and implement objectives community wants to explore new represen-
collectively. Also implied are common tations and answer new questions.
semantics, the timing of the specific aims On the contrary, however, information
2.2 Specific Ethical Problems Facing which are to be fulfilled successively, the may be a nuisance if it represents a vector
Health Care Information Systems rights and duties to access treatment of the will of domination, and becomes a
results, and the rules of interpretation. Such screen against transparency.
In such systems, people are the information a final agreement could not be obtained An ideal (efficient and open) health
content, especially fragile and underprivileged without mutual respect between the actors: information system should contribute to
people. According to John Rawls’ “Theory to be seen as people, professionals, and the germination of intelligence, in a context
of Justice”, the rights due to any human competent. Also, such an agreement could of liberty.
must be expanded when underprivileged not be obtained without frank and fair
people are at stake. The consequences of discussions. Indeed, nothing reliable can be
this statement for health care information achieved without a sufficient level of “a
systems seem to be the following: priori” mutual confidence.

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Ethical Problems in Health Information Systems

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