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1. The kind of human relationship thatexists in any information system,whatever its content, in any enterprise,provided that people are linkedto andthrough pieces of equipments, hard andsoft.

2. Among enterprises, or institutions,healthcare organizations have anadditional human dimension: they arehuman service organizations,aimed to(literally) change human beings.Due tothis specificity, people are part of corresponding information systems, or,following the health objective, fragilepeople.

Let us examine these two dimensions.

2.1 Ethical Problems of anyCollective Information System

Any information system can be a cause forconflicts, or even a possible source ofviolence. In fact, all choices made in acollective information system depend onthe concept that decision makers have ofthe kind of relationship that exists betweenusers, both among themselves and with themanagers. These social, ideological an dcultural choices have anethical background:sharing of duties and the rights amongpersonnel members,in accordance with thegeneral objectives of the ente rprise.

When an information system is designedby one category of professionals, a consi-derable risk exists that it will be designedfor them, ignoring the goals and interests ofthe others. This is especially the case inmedical information systems, but evenmore so, in management informationsystems.

Among others, the following items are

potentialsources of debates and conflict:

Opinion Paper

Ethical Problems in Health Information SystemsJ.-M. Fessler, F. Grmy

1. Ethics and Infoethics

Any large human organization implies thatnumerous people and diverse categories of personnel work together. In the specialcase of healthcare organizations (eitherhospitals or health care networks, such asmanaged care organizations),multiplicityand multi-professionalism are keywords.

The collective characteristic implies thedefinition and respect of common aims,rules of living, duties, and rights. In thissense, primarily ethics leads to such defini-tions and respect. According to E mmanuelLevinas, a major French ph ilosopher of the20th century, ethics is at the r oots of philo-sophy (la philosophie premire est unethique).

Within health organizations, informati-on systems, overall, are built to exchangerelevant information in order to deal withdiverse activities, such as delivering the bestpossiblepatient care, as issued by thepopu-lation it is supposed to be serving, in thepresent and future.The information systemmust contribute to organizational decisions,such as medical decisions, management decisions for the daily routine, andstrategicdecisions for long-term evolution. In thissense, information systems representintegration tools and serve thecoherence of the institution.

It then becomes obvious that the designand use of information systems deserves aspecific ethical reflection, and th at it is notunreasonable to introduce the concept andword infoethics.

2. The two Levels of InfoethicsThe ethics of information should be consi-

dered at two levels:

SummaryObjectives: To introduce term and concept ofinfoethics and to argue on its importance for healthinformation systems.Methods: To argue about our viewpoint of thedominance of the human component, which has beendiscussed at an IMIA working conference held inHelsinki, Finland (February 1998) devoted to theevaluation of health information systems.Results and conclusions: Any technology sets arelationship between human beings and theirenvironment, both physical and human. No technologycan be seen as merely instrumental. This is especiallyrelevant when dealing with large automatic informationsystems, developed to contribute to the managementand integration of large organizations, such as hospitals.In such a context, the environment is mainly made upof 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 softwaresystem can be an absolute failure in everyday use. Inany information system, the human factor is, ofcourse,human-computer interaction, which alwaysoccurs when one person interacts with the machinery.However, in a simultaneous multi-user context,human-human interaction is the main question totackle. The evaluation of large information systems,such as those found in hospitals, is founded inthe whole concept of inter-human relationships whichunderlie the design and use of the system. Indeed,such an information system predominately appears asa social system, with its psychological, sociologicalandethical features.

KeywordsHealth Information Systems, Hospital InformationSystems, Ethics

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q definition of information system objec-tives,

q selection of relevant information toreach those objectives,

q consensus about th eir signification,q selection of indicators to be computed,q possible biases about their interpretation,q rigidity of the information system, which

prevents users from mak ing it larger andricher.

Each of these items may ignite astrugglefor power. Consequently, this very oftenleads to a denial of the necessary multi-professional approach.

International experiences show thepossible consequences of an unfairlydesigned,violentand unethical informationsystem: If an information system is basedon an incomplete and twisted model of theinstitution, it may not be accepted orrecognized by a significant part of thepersonnel.q They resent, and are frustrated by,

the inequality between info-rich andinfo-poor.

q They lose faith in the informationsystem.

q The quality of entered informationdecays.q They feel increasingly unconcerned and

lose their creativity.q Finally, the failure of the system

becomes o bvious.

Meanwhile, managers are fed biased infor-mation and release a wooden discourseabout the institution, in other words, asimplified description very far from thecomplex reality.

2.2 Specific Ethical Problems FacingHealth Care Information Systems

In such systems,peopleare the informationcontent,especially fragile and underprivileged people.According to John Rawls Theoryof Justice, the rights due to any humanmust be expanded when underprivilegedpeople are at stake. The consequences of this statement for health care information

systems seem to be the following:

a) Just as the entire institution, its informa-tion system must be designed and builtaccording to the idea that the patientand the quality of his/her care arethecenter. That they are ordered aroundthe process of diagnosis, prognosis,therapy and follow-up of individualpatients. That is the back bone of theinformation system. All of the rest medical research,management informa-tion must be derived from it.

b) The demand forconfidentiality,which isof course very strong, is justone of thenumerous ethical problems of a healthcare information system.

3. How can the True Ethicsof Information in Hospitalsand other Health CareOrganizations be Ensured?The following recommendations concernboth levels of infoethics. The reason is,infoethics research is only part of thegeneral

quality research of an institution,which isitself the result of an ethical demand.The first key to quality is the shared

conviction that a collective informationsystem is primarily a tool forsocial coherencywithin the institution.

The second key is truedemocratic debateamong all concerned actors. Such debate isdemocratic both by the transparency of itscontent, as well as by the confident way inwhich it is conducted. It implies multi-professional brain storming and thinking todefine, accept, and implement objectivescollectively. Also implied are commonsemantics, the timing of the specific aimswhich are to be fulfilled successively, therights and duties to access treatmentresults, and the r ules of interpretation.Sucha final agreement could not be obtainedwithout mutual respect between the actors:to be seen as people, professionals, andcompetent. Also, such an agreement couldnot be obtained without frank and fairdiscussions.Indeed, nothing reliable can beachieved without a sufficient level of a

priori mutualconfidence.

A third key is the common convictionthat all have a common obligation thattranscends their respective professionalambitions, to build a patient centered institution in which the quality of care,respect toward the people,and considerationfor the demands and wishes of the patientsare the permanent, simultaneous concernsof every actor. (Patients are so often requiredby the professionals to adapt themselves tothe imposed ru les of the institution withoutdebate.) O bviously, these collective concernsof the institu tion as a whole have a significantimpact on the design of the informationsystem.

Some specific toolswhich may be helpfulin fulfilling the recommendations ar e:q audits,q centers of guidance for good information

practice,q issuing ethical charts,q committees for infoethics to solve

concrete cases,q organized forums on the net,q models anticipating future pro blems.

4. ConclusionIn conclusion, in communally managedorganizations, the location of information(in the scientific meaning of the word) is of considerable importance.

An information system is essentiallyvaluable throughthe relationshipsit creates:information is the symbol, the key and thecondition of human interaction. Symbol,since informat ion facilitates exchange in auseful manner, key and condition,since thecommunity wants to explore new represen-tations and an swer new questions.

On the contrary, however, informationmay be a nuisance if it represents a vectorof the will of domination, and becomes ascreen against transparency.

An ideal (efficient and open) healthinformation system should contribute tothe germination of intelligence,in a contextof liberty.

Fessler, Grmy

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ReferencesThe following bibliography deals with the topic of this paper.1. Fessler JM. DE A dthique mdicale et biologique.

Problmatique thique du Programme deMdicalisation des Systmes dInformation. 18juin 1993. Directeur Professeur P. Degoulet.

2. Fessler JM. Doctor at de lUniversit R enDescartes (Paris), mention thique mdicale etbiologique. Problmatique thique de lusagedes informations de sant publique. 9 octobre1997. Prsident : Professeur C. Herv, Directeurde thse Professeur P. Degoulet.

3. Grmy F, Bonnin M. Evaluation of automatichealth information systems. What and how? In:EM SJ van Gen nip,JL Talmon (eds):Assessmentand evaluation of Informations technologiesIOS Press,Am sterdam, 1995:9-20.

4. Grmy F, Fessler JM, Bonnin M. Informationsystems evaluation and subjectivity. Internatio-nal Medical Informatics Assiciation 1999; 56:13-23.

5. Heidegger M. La q uestion de la Technique(1953), in Essais et Con frences trad. A. Prau ,Paris,G allimard 1958:9-48.

6. Lvinas E. Ethique et Infini. Paris: Fayard etRad io-France,1982.

7. Nguyen TN, Fourez G, D ieng D. La santinformatise. Carte sant et questions thiques,De Boeck-Wesmael s.a., Bruxelles, Belgique1995.

8. Wurman RS. Information anxiety. What to dowhen information doesnt tell you what youneed to know. New York: Bantam Books,1990.

Correspondence to:Prof. Dr. Francios Grmy17, chemin de lEscaletteF-30700 UzesFranceE-mail: Francois.Gremy@wanadoo.fr

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