For many years now, diagnostic investigation via medical imaging has been accused of widening the breach in the doctor–patient relationship. The development of computer and digital applications meant for the collaborative search for information among healthcare professionals does not adequately take into account the nature and real needs of the therapeutic act [MEN 09]. For some, IT in healthcare is contributing to the “mechanical assimilation of the human body, which sidelines the flesh-and-blood reality of mankind” [LEB 99]. Its use by the practitioner leads to a reductionist, dualist and mechanical vision inherited from the Cartesian tradition.
Today, human–machine communication constitutes a major technological, industrial and social challenge. The difficulty is no longer only of further extending these performances, but of improving exchanges of information with human users and adapting to their expectations and skills. All technologies define a relationship between human beings and their environment, both human and physical; indeed, one of the great lessons of Hippocrates is to study humans in their biotope in order to be useful to them. As this environment is now largely digital, it is advisable to observe it from an ethical point of view.
No technology can be considered purely instrumental. The human factor, and thus the human–computer interaction, is primordial. In a multidisciplinary context, this inter-relationship is even more significant in the context of the doctor–patient relationship. For this reason, the evolution of IS in healthcare is based on human interactions, which underlie the design, setup and use of technological tools. This situation assumes the necessity of increased dialogue and of human assessment between the doctor and his or her patient.
Now, linguistics, ethics and cognitive and social psychology must be incorporated in the same way as the computer culture in IT models. From this point of view, the collaborative search for information appears as a technological system with social, psychological, sociological and ethical characteristics.
The objectives of this chapter are (1) to describe the evolution of data in practical wisdom, (2) to understand the way in which the methodology of our research was established, (3) to present our ethical analysis space and (4) to present the framework of our resulting ethical model, which are essential to carrying out our field studies on the subject.
Before going into the detail of the subject of the method used, we believe it is crucial to provide a short preamble on the subject of our study; that is, the IS in its current form. The IS, as we understand it in this case, corresponds to a system constituted by the definition of business processes and those of the stores and flows of information illuminating these processes. It is an organization of resources1 used to gather, classify, process and diffuse information on a given phenomenon.
The IS represents the vehicle of communication in this organization and possesses a digital system composed of:
- – computer workstations and servers (data, images, etc.);
- – applications (operating systems, office software applications, professional software, etc.);
- – communication and telecommunication infrastructures (local networks, intersite links, telephone networks, Internet access, radio links, etc.).
The engineering of an IS is concerned with the incorporation and use of information in social or technical systems. Information has multiple functions within an organization: it enables this organization to attain its objectives and contributes to the maintenance of its unity. A real system is known only through the information it causes to circulate inside and outside of itself. Information creates and maintains the system insofar as it plays an essential role in communication between the elements of the system and between the elements of the system and its environment. Thus, throughout its entire lifecycle (development–use–transmission–archiving), medical information is dematerialized in order to be transmitted or preserved in a digital format within an organization.
Two types of IS constitute our study:
- – IS patient management supports for the production of reports, in particular, IT management;
- – decision-making assistance IS used by (information) managers in their decision-making activities, via the development of the decision-making system. Depending on the performance, this technological tool can aid the decision-maker in activities of intelligence2, modeling3 and choice4.
The question underlying our study is the identification of the ethical principles surrounding the design and use of an IS in healthcare, and particularly in medical imaging. The essential challenge of this part is to link this procedural ethical challenge, based on the ethics of communication and dialogue, to a moral content capable of giving meaning and an end purpose to the management of treatment, and more globally to medicine.
It is a matter of understanding how these ethical concerns addressed by actors interact in decisions, in the behaviors they are led to adopt and in the use of IS at such instances. This question has given rise to numerous questions around this theme in the analytical questionnaires that we consider the very bedrock of our study. These analytical questionnaires have enabled us to study and compare the ends and means involved in the production of an IS.
2.1. Info-ethics: data on practical wisdom
The development of communication systems in our organizations is undoubtedly the primary cause of the current acceleration of exchanges, sharing and the resulting complexity. It is not always easy to distinguish between the concepts of data, information, knowledge, communication and organization because these concepts simply cannot pass from one to another in a more or less harmonious sequence [VAC 09]. A real system is known only through the information it causes to circulate inside and outside of itself. Information has multiple functions within an organization: it enables this organization to attain its objectives and contributes to the maintenance of its unity. It creates and maintains the system insofar as it plays an essential role in communication between the elements of the system and its environment. Some information must be shared; other information must be exchanged, and still other information requires no transfer, although it is vital to the concretization of actions or to the activity of an organization. Information becomes an object through perspective, shaping or simply the memory of a situation. This object has no existence except through human interpretation. The communicational approach of organizations [BOU 03, BOU 07] proposes a framework integrating the communicational dimensions of organizations by observing activities that produce meaning. It seeks to keep together three levels: organizational, political and operational, wherein communication results. This communication is included in information and is “a relationship, uniting subjects via the intermediary of material and intellectual mediations” [JEA 04].
It took many years for the IS to be the subject of research on fundamental philosophical principles, particularly in the conceptualization and study of data, information and knowledge. It was not until the studies by Floridi on NTICs within the functioning of organizations and his concept of the “infosphere”[FLO 04] that human beings, data, information, knowledge, information technologies, society and the interests of individuals were compared with an ethical point of view [FLO 07a, FLO 07b]. In these conditions, a description once epistemological, anthropological and ethical of the progression of data toward a practical wisdom dear to Paul Ricœur [RIC 90] seems essential to the development of a deeper understanding of the way to assess the theoretical and practical implications of communication within organizations.
2.1.1. Epistemological illumination around the pyramid of knowledge
The diffusion of information constitutes a process of communication involving epistemological elements5, ethical values and universal norms necessary to agents of information. In an epistemological and ethical context, there is a conceptual relationship between data, information and true knowledge [DRE 99, FLO 05]. To better analyze these concepts, it is vital to have a thorough understanding of the deeper nature specific to each of them.
Generally speaking, computer specialists use the term “data” more often than “information”. This arises from the fact that an item of data is defined principally by its type, which can be digital, alphabetical, temporal, binary, alphanumeric, etc. Data have only content and a type; they are not significant in themselves but are something objective and real. They are composed of facts, observations and natural elements, and have little meaning if not processed. For this reason, data are at the very bottom of the pyramidal hierarchy of knowledge.
For its part, information is characterized more by its meaning, and its acquisition and understanding lead naturally to knowledge. This knowledge is what allows us to situate information and to contextualize and globalize it; that is, to place it as part of a whole. However, does the term “information” have a precise meaning? Does it constitute a universal scientific concept attesting to unified knowledge?
Etymologically speaking, information provides knowledge that the recipient does not have or cannot predict. It reduces uncertainty.
From an ethical point of view, information provides meaning, coherence, intelligibility and direction for the development of a relationship of trust between doctor and patient.
This definition stipulates that the value of information is linked to the decisions it enables people to make. Thus, its end purpose is to model the framework of future actions. This information must be incorporated into a system. It is defined as being a process by which a human or social entity is transformed. According to some scientists, it corresponds to a fundamental physical value, just like time, weight or energy, meaning that it can be quantified according to context. Information is a proteiform concept that cannot be easily understood. According to the systemic approach, information disappears for the benefit of communication. The system theory of communications models an organization using the links that unite its elements, considering information as the lubricant that enables the system to reveal representations of its various parts. Information thus constitutes the intermediate stage of the pyramid. The understanding of initial data generally involves the knowledge of other connected data constituting a coherent context for “a mechanism of successive deductions called inferences” [TOU 04]. It is on the basis of this hierarchical modeling that many tools and methods have been developed.
For its part, knowledge answers questions of the type “Why?” and “How?” Knowledge is possessed by an individual, which is not the case for information or data. It is internalized by the person, who formats it according to his or her experience, background and perceptions of the moment. In this sense, knowledge is eminently subjective and personal. Even though collective knowledge exists, it is nothing but the sum of individual knowledge. It can be materialized in products (technology) and multimedia supports (books, films, etc.). Thus, it occupies the upper levels of the pyramid.
Each stage of the pyramid, thus, corresponds to a series of means used to capture, manage, diffuse and exploit elements (data, information or knowledge). This pyramidal ascension, starting from data and rising to knowledge and thus finally to practical wisdom6, can be illustrated through the words of the English poet Thomas S. Eliot, when he asked: “Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?”7. This wisdom, located at the very top of the pyramid, is considered to be the ultimate stage of cognitive evolution. According to Spence [SPE 10], the concept of wisdom is understood as being a kind of “meta-knowledge” and “meta-virtue”, placing it at the crossroads of epistemology, axiology and eudemony8.
In summary, we can state that, much like genotype versus phenotype, data constitute the base support for information. Their nature is both raw and pure. Data represent the “DNA of information”. If we continue with this train of thought likening information to genetics, we can suggest that information corresponds to a phenotype: all of the observable characteristics of an individual. In this context, the expression of data (in part) produces information, as the genotype does the phenotype. Data are not the only sources of information; the environment also plays a significant role, as with the environment’s effect on phenotype (see Figure 2.1).
Genotype and phenotype are terms invented by Bateson in the early 20th Century. It was this same Bateson who, in 1905, proposed the term genetics to designate “the science of heredity”. An inheritance is nothing more than the transmission of these material assets but, from a human point of view, it is also the transmission of the physical and moral characteristics to their descendants. In these conditions we can conclude that, like genetics, information designates the “science of communication”. The data–information relationship, despite its apparent simplicity and the extraordinary rise of NTICs, remains a central problem in modern communication. Knowing all information – meaning all the information contained in the infosphere, or “infonome”9 – would require observing it with all possible analytical tools and in every possible external and internal circumstance and environment, which is impossible! This creates the complexity of communication, which cannot anticipate (and consequently master) the entire flow of a variable stream of information, which is in perpetual mutation in an unstable and dynamic environment.
For this reason, the equation Information = Data + Environment translates the fact that the composition of a piece of information corresponds to the sum of the intrinsic value of the data and of the environment in which this information is expressed. By nature, data are pure values that are fixed in time and do not vary, unlike the environment, which is in perpetual movement. Thus, the only way of more effectively framing and thus understanding information is to better understand and know the environmental parameters of reality.
In these conditions, the proper use of knowledge necessarily involves an ethical support for information, such as bioethics for genetics.
It is in this context that our model of ethical analysis applied to an environment can contribute to a better grasp and understanding of information. An understood environment is a more ordered environment with weaker entropy. In these conditions, so-called “ethical” information can be translated into knowledge. This confirms the theory of Luciano Floridi [FLO 02] around “the ethics of information”. According to the author, “an action considered to be fair or considered as ethical would lead to reduced overall entropy (degree of disorder), and to an increase of the knowledge we have of it”.
2.1.2. From data to knowledge through an information system
A detailed description of the progression from data to knowledge seems vital to the development of a deeper understanding of the manner of evaluating the theoretical and practical implications of information within the doctor–patient relationship via NTICs. On the basis of this observation, Spence [SPE 09a,SPE09b] created a universal model of normative evaluation of the quality of digital information. According to him, theoretical and practical knowledge have impacts on medical decision-making. The diffusion of information is a communication process involving epistemological elements10, ethical values and universal norms necessary for information agents. Knowledge is what makes it possible to situate, contextualize and globalize information; that is, to place it in a whole. Each stage of the pyramid corresponds to a series of means used to capture, manage, diffuse and exploit elements (data, information or knowledge).
According to Nonaka and Takeuchi [NON 11], we can distinguish four modes of knowledge conversion:
- – Socialization: this is an interactive process by which the members of a team construct representations and forms of shared experiences. It is based on the sharing of experiences. Meetings encourage the sharing of knowledge for the development of a project in the process of completion. Members also socialize tacit knowledge via observation, imitation and practice. Interactions with users are also a source of socialization.
- – Externalization: this consists of transformation of tacit knowledge into explicit knowledge. It is based on dialogue and collective reflection using metaphors, analogies and models.
- – Combination: this corresponds to a process by which the members coordinate and elucidate their own knowledge to create a common knowledge. It is based on the theory of information processing. Individuals combine and exchange knowledge using documents, meetings, telephone conversations and computerized communication networks.
- – Internalization: this is based on the application of explicit knowledge to enrich the user’s own tacit knowledge base. It is closely related to organizational learning. Documentation or verbal dialogue facilitates the transfer of explicit knowledge to other people. It relies on resources aiding the members of an organization to access the experiences of other members11.
In these conditions we can see, when it comes to knowledge, the existence of “paradigm” thought structures; that is, principles and logical connections between the primary concepts that determine the mode of knowing. Anything that does not fit into a schema of thought will be set aside as insignificant. Concretely speaking, comprehension is possible only inside a single thought structure or paradigm12. This context must be comprehensible for the recipient. This becomes of primordial importance for the qualification of data, but the value of information is manifested and expressed in their end purpose.
Moreover, the comprehension, perception and idea of usefulness of a piece of data involve the five human senses in order to be effective and must thus require the smallest possible amount of intellectual translation. Data are transmitted naturally, throughout consultations between a patient and his or her doctor, in order for his or her care to be effective. These data can be of various types: medical, socioeconomic, religious, sexual orientation or behavior, HIV positivity, etc. It is a matter of supporting the patient in the appropriation of particularly sensitive knowledge, and the doctor must ask himself or herself what the patient desires and can hear. He or she may exploit or filter certain information and know how to manage his or her concerns from his or her end.
The IS must guarantee reliability and homogeneity of data, which must be concretely manifested by the setup of a computer system that, once data are recorded, categorized and organized, creates added value by producing information that is reliable and legible and can be processed; that is, comprehensible as a result of being placed within a framework that gives it meaning or chosen in a contingent and useful context. The IS is considered to be a subsystem of the establishment, located at the interface between the operating system used in production and the guidance system that sets objectives and choices.
This IS also supplies intelligence to the decision-maker, in the sense that the latter has access not only to data illuminating his or her decisions but especially to the understanding of the data gathered inciting him or her to action; the raw data are successively transformed into information and thus knowledge. This evolution of the status of data toward knowledge can be illustrated by a pyramid whose base corresponds to data, the middle to information and the peak to final knowledge. The design of an IS imposes the acquisition, storage, processing and diffusion of information, which is converted into knowledge that can be understood, digested and controlled by the user.
Upstream, the IS requires a certain negotiation within the structure regarding the constitution and management of data. An agreement must be reached between the various participants on the information to be collected based on the data and objectives pursued. To do this, it is especially necessary to take into account the sociological and cultural contexts of the structure. It is clear that the majority of researchers emphasize the relationship between data and information, but this is less true for questions concerning knowledge [ALA 01]. We can establish an initial schema interrelating data, information and knowledge (see Figure 2.2).
According to the authors, data concern the medical file, information constitutes the proper message and knowledge forms the model. The whole corresponds to the IS of data reception, thus to the processing of these data into information, ending with the knowledge resulting from the model [WIL 09]. We can now establish another, more advanced schema of the earlier representation influenced by Boisot and Canals [BOI 08] (see Figure 2.3).
In this new representation, we can see that the expectations of the knowledge agent are expressed by the presence of two filters through which data pass. The first filter, called the perception filter, converts people and activities into data, while the second filter, called the conception filter, transcribes these data into information. This information can now be communicated13 or incorporated into a knowledge model14 that will have the effect of having actions and added value on the physical world and its activities [BOI 08].
In their books on the subject, Collins and Kusch [COL 98] and Collins and Evans [COL 07] established a categorization of actions that can be performed by machines and those that remain fully within the human sector. They used the term “action” and differentiated it from behavior, which they designated as “a sequence of bodily movements” [COL 98]. Actions are always associated one way or another with intentions and correspond to the sum of behavior and intention. Thus, a direct link exists between knowledge and action via the intermediary of intentions.
Ultimately, users have logical requirements, notably that of having access to reliable, pertinent data that are available when they need it. Above all, they want these data to be useful and understandable. According to Tourreilles [TOU 04], good IS ergonomics involves the mixing of numerical and textual elements, as well as visual, auditory, tactile, olfactory and gustatory elements. This evolution is significant technically and must be part of a guiding computer schema.
However, it is even more important at the cultural level, as it implies a shift from a culture of measurement of an objective past that does not give a great deal to a culture of projection that provides real guidance, on the administrative level and on the medical and healing levels.
2.1.3. Quality and choice of medical information
Quality is not a unique objective concept. It can be defined, when considering things more completely, as the factor that will result in the satisfaction of the healthcare user with regard to the product or service consumed, depending on expectations, needs or wishes, which vary naturally from one type of product or service to another, as well as from one person to another and may even, for a single person, vary from one circumstance to another. With regard to medical information, quality designates the fact that, during processing, conservation or diffusion, data do not undergo any alteration or deliberate or accidental destruction and retain a format that allows them to be used. In other words, quality is defined as assurance that the content of the information has not been modified during its transmission15. It influences the reality of the free and informed consent of the patient with respect to the healthcare professional.
Given the immense daily production of information, it is helpful to take an inventory of the information that requires conservation. It seems necessary to retain only what is essential. Information that is retained does not just require storage; it must also be accessible and refreshed at regular intervals. Finally, it is essential to transfer this information from support to support as technology evolves. Thus, it is advisable to establish digital archives with clear rules appropriate to a field in perpetual mutation. Ideally, the individual must be able to determine himself or herself what he or she wants to keep, thus contributing a distributed solution to the problem of choosing which data to conserve.
To make wise decisions and reasonable choices on the subject of healthcare, both the public at large and the healthcare professional need, and have the right, to expect that hospital IS will provide them with precise, up-to-date information that is easy to understand, as well as high-quality products and services.
With regard to overall patient support and the quality of information transmitted, ONCORA (care network in oncology in Rhône-Alpes, France) advises the following [FOU 08]:
- – medical information must circulate with a guarantee of confidentiality and in a good-quality process;
- – information transmission tools must be effective;
- – all healthcare actors must have the same amount of information on the patient being cared for;
- – each healthcare actor must be a vector of information in his or her field of expertise;
- – every actor involved in the treatment and possessing information transmitted by the patient must record this information in the patient’s file;
- – medical information is always progressing and yet to be completed;
- – information is revalidated (ability to revalidate a diagnosis, therapeutic strategies, etc.);
- – information is confidential within the treatment team (city hospital);
- – consistency of information requires coordination time.
For this reason, the quality of medical information can be characterized by five clearly determined elements and criteria:
- – integrity;
- – accuracy;
- – precision;
- – validity;
- – authenticity.
The development of the quality use of public healthcare information relies on shared trust, induced by prior ethical debate involving mainly technologies, morals, rights, deontology and the analysis of practices [LER 04].
22.214.171.124. Indicators of data quality
To evaluate the quality of services, we believe it is crucial to begin by translating quality objectives into measurable indicators of information. A complete system of quality control uses various types of indicators, each of which measures a different aspect of quality and brings out complementary information. There are various ways of conceptualizing and defining these indicators. By definition, an indicator is a piece of information intended to aid an actor to take a course of action toward the achievement of an objective or to enable this actor to evaluate the result of this action.
One of the numerous definitions of a quality indicator is that it is an evaluation tool, and it must, therefore, possess certain properties, specifically:
- – pertinence:
- - true,
- - fair and stable,
- - precise and sensitive,
- - useful;
- – operational character:
- - easy to establish (simplicity),
- - easy to use,
- - communicating,
- - useful to prevention;
- – consolidable character:
- - quantifiable,
- - accruable;
- – nominal character:
- - is never unique,
- - limited in number;
- – relational character:
- - recognized/acceptable,
- - motivating/federative/mobilizing [PON 04].
In summary, for Gilles Duhamel16, information delivered to patients, unlike communication, must be at once objective, adapted to the patient, based on scientific proof, up to date, reliable, understandable, accessible, transparent (sourced), pertinent and in compliance with legislation.
The indicator must have operational and strategic relevance and cognitive effectiveness in terms of the knowledge it contributes. Indicators are used to inform various types of decision-making, strategic, tactical and operational, regarding the information to be diffused. It is a piece of informational data vital to the spatial, temporal and typological characterization of the action being assessed.
126.96.36.199. Criteria for improving the quality of medical information
Part of making sure that the healthcare information supplied by IS is of good quality involves consideration of the actions and indicators they should put in place to achieve this quality.
On the basis of this observation, several measures are necessary and in line with this objective of quality of medical data:
- – supplying information that is consistent and based on medical evidence arising from medical sources and references in order to guarantee the credibility and soundness of the data;
- – evaluating information rigorously and fairly, including that used to describe a product or service;
- – indicating clearly whether the information is based on scientific studies, expert consensuses or personal or professional experience or opinion;
- – ensuring that medical opinions or advice are given by qualified practitioners;
- – indicating when products (medications or medical devices) or healthcare services are subject to government regulations and have been approved by appropriate certification organizations such as the U.S. Food and Drug Administration, the U.K. Medicines Control Agency or the French Agence Française de Sécurité Sanitaire des Produits de Santé (French Agency of Sanitary Safety of Healthcare Products);
- – recognizing that certain subjects are controversial. If this situation occurs, it is vital to present all reasonable parties in a balanced manner. For example, informing the healthcare user that there are alternative treatments for a particular health condition, such as surgery or radiation therapy for prostate cancer;
- – making information more accessible to the patient or non-specialist healthcare professional so that he or she can understand it and use it in the best possible conditions. To do this, the products or services used should be described in language that is clear, easy to read and appropriate for the users targeted;
- – clearly indicating the date of transfer or of hosting of data to ensure that information is current and up to date.
This non-exhaustive list of criteria for information quality is necessary for the users of this information to form their own opinions. Individuals must be able to judge for themselves the quality of the healthcare information they use via communication tools.
2.2. Identification of method used to develop the ethical analysis model
Our analysis model was created based on the convergence between Platonic dogmatism and sophist empiricism. For Plato, universality, conception and generalization in the development of knowledge as a collective construction of stabilized knowledge were important. Without the hypothesis of universality of concepts and cognitive organizations, science is not possible. The basis of the issue of knowledge is transcendental. This model of thought constitutes a general operator of truth, allowing us to analyze reality and to interpret both its universal essence and its uniqueness. Mathematics, the science of numbers, the “divine science”, is a universal language that enables us best to express the essence of phenomena. This whole intellectual movement was at the heart of the epistemological reflection of Aristotle, Descartes, the Vienna Circle and Kant.
Parallel to this, the sophist Protagoras emphasized that it is in action and movement that the intentions and meanings of things become known. Human intentions cause the revelation in situations, in the same movement and context, of the intentions and resources for these intentions, the meaning and pragmatic conditions of interpretation and evaluation of the appropriate action. The challenge of this sophist position is to combine knowledge and action at the moment of the emergence of meaning. This stream of thought was developed by Leonardo da Vinci, G.B. Vico and contemporary constructivists. On the basis of these two models of thought, we have developed our own ethical model applied to medical communication, constituting a process of mediation between social theories and practices and concepts and the empirical equivalent. This new model thus constitutes a theoretical perpetual adjustment system of emergence in a context of action and movement. According to Sinaceur [SIN 99], “a model always acts as a mediator between a theoretical field of which it is an interpretation and an empirical field of which it is a creation”. It always manifests a simplification either of empirical events or of a theory it desires to put forward. It can, therefore, perform multiple functions depending on the way in which it has been developed and the end purposes of its use [MUC 12].
Moreover, to model is to design, construct and learn to use instruments, or to orchestrate [LEM 98]. The modeling of a complex system translates mainly as the fact of modeling a system of actions. This modeling of complex action represents the general idea of a process, which is translated by its exercise and its result. On the basis of this observation, we use the basic concept of systemic modeling, which is the action taken to construct our own ethical analysis model. It starts from the question: “what does that do?” The characterization of an action involves the concepts of process and system. Thus, any complex system can be represented by a system of multiple actions or by a process that can be an enmeshment of processes. In this systemic modeling, the concepts of organization and information are closely linked. Concepts suited to systemic modeling include plan or process, active unity, system, design, conjunction(or articulation), organization, balance, intelligence, effectiveness, projection, pertinence, comprehension and teleology.
Our model thus illustrates a systemic approach of exchanges between individuals and considers the interdependences between organizational structures, organizational exchange systems, culture and relationships of power between actors and context.
This systemic modeling refers to three concepts:
- – energy, which expresses what is produced;
- – the game, which expresses the action of the game and the result;
- – organization, which expresses the action of organizing and the result of this action [LEM 99].
We have decided to base our model on an analysis framework composed of three axes of interpretation: the actions, situations and intentions that form an ethical event. Intention17 is associated with human values and the four universal ethical principles. Because of our tendency to intend to act out ideal concepts, some of these may become ideal models of our activity and can guide it, meaning that they can be presented as values. On the basis of this realization, the subject of our research, in this case “the design, setup and use of an IS in healthcare” representing the event in this analysis model, is therefore not a simple spontaneous action. It takes root in a situation, with an intention that incorporates universal human values and in a defined social framework, as illustrated by Figure 2.4. This analysis model can translate an evolutionist algorithm, the objective of which is to obtain an approximate solution to an optimization issue when no established method exists. This modeling thus belongs to the family of stochastic algorithms because it iteratively uses random processes. It is used to “reproduce the result of a succession of events” [GRA 03].
In light of these reflections, we can confirm that we have constructed a model that can be characterized as systemic and neo-Platonic in nature.
The construction of the various facets of our ethical model is based on a progressive and iterative approach. It can be divided into five phases:
- – initialization, dedicated to the identification of needs of various types, or to the taking note of sources of information and creating a plan of action to follow;
- – inventorying of existing elements in the environment: tools, materials, actors and organizational structures;
- – study of what is recommended. Taking note of actors’ missions and assignments;
- – analysis of effective technological tools and materials (final or intermediary). Actors’ real activity is also noted by questioning them and accompanying them during their activities;
- – restructuring of elements identified in the preceding phases to form the basis of our model.
On the basis of this intellectual approach, our model may describe its environment statically and in detail, and its activity flows and especially interactions dynamically [BEL 04].
Under these conditions, we led a field study on the various healthcare IS, by performing targeted interviews with people in charge of these IS and their users. This approach of going into the field and surveying IS designers and users, and of observing and interacting with them, seems self-evidently effective for understanding the conditions in which these individuals use medical information on a daily basis. This manner of proceeding uses qualitative or empirical–inductive methods in its approach18. The comprehensive interview method, which is a part of these qualitative methods, proposes inverting the mode of construction of an object by starting with the situation and thus constructing only a theoretical mode. This collection work took place fairly early in our research, which made it possible for our readings and the direction of our work to be based on designs and issues coming straight from the field and not on purely theoretical ideas. Direct contact with other information-gathering practices allowed us to anchor ideas revealed by various readings in the literature of numerous books addressing the subject.
This work carried out in the field corresponded to three objectives:
- – observe actors as they carry out their daily duties;
- – conduct interviews with them;
- – understand the context, their expectations and the difficulties they encounter in the manipulation of their IS.
During the second phase, we conducted these field studies via the intermediary of questionnaires based on the ethical model crossed with the “environmental parameters of real life”, established on the basis of our interviews combined with bibliographic research (see Table 2.1).
Table 2.1. Support on which analysis questionnaires are based
|Fundamental ethical principles of the theoretical architecture of an IS||Environmental parameters of real life|
|Structural and technological||Strategic and methodological||Organizational and regulatory||Relational and cultural|
|Principle of autonomy|
|Principle of beneficence|
|Principle of non-malfeasance|
|Principle of justice|
To reflect on the nature of an IS tool, we must reproduce it in the game of interdependence that it imposes on us; this makes it necessary to consider not only the technical instrument and its end purpose as such, but also the condictions and impacts of the object’s existence. In this sense, the positioning of the technological aspect occupies an existence midway between the tool and the environmental milieu. A system is composed of a group of elements in relation with one another in such a way that the development of any one of them causes the development of the whole and that any modification of the whole has an impact on each part.
These multisectoral “reading keys” of real life thus hinge on one another and make it possible to give an applicative and concrete value to the ethical framework.
According to Dherse and Minguet [DHE07] in their book entitled l’éthique ou le chaos? (Ethics or chaos?) and according to Ponçon [PON 09] in his presentation Une éthique de l’usage du SIH (The ethics of HIS usage) during HIT 2009 (Health Information Technologies 2009), the history of IS covers four successive eras:
- – technical era, corresponding to the era of mass production;
- – organizational and regulatory era,composed of the organizational era with more in-depth research regarding a better contribution of TICs to the performance of industry processes;
- – behavioral era, representing the relational era and the era of trust, requiring healthcare professionals to act in the best interests of the individual and to report on this action afterward;
- – era of end purposes and ethics, corresponding to the era of increased responsibility on the part of the professional involved in ethical principles. This is the point at which mutual trust attains its full importance.
In addition, throughout his book, Abbad [ABB 01] emphasized hospital management based on strategic and technical tools, participatory management, financial management, an organization based on communication and the paying of particular attention to the sociological and cultural aspects inherent to actors in the establishment.
According to Breton and Proulx [BRE 02], the emergence of NTICs has contributed to the creation of a “digital paradigm” 19 representing a homogeneous whole in which four dimensions mingle: a basic technology (electronic in this case), a methodology specific to the processing of information, a system of representation to a coherent and universal world (extolling the values of ethics) and a strategic and economic challenge. The power of this new space tends toward a synergy operating between dimensions that were previously splintered in a world where technology, economics, politics and philosophy interfered with one another. This paradigm thus constitutes the cultural and ethical product of a technological development or a digital convergence, putting TICs at the forefront. In these conditions, designing a technological product has become a strategic act that not only has economic and technological dimensions but also political, ethical and social dimensions.
Moreover, we can emphasize the case requesting approval of the hosting of healthcare data of a personal nature instituted by the Ministry of Health20, composed of six forms21 that cover a multisectoral perimeter, such as:
- – description of technological provisions for the hosting service;
- – security policy;
- – compliance with regulations on individual rights;
- – organization and strategy of the hosting and archiving service;
- – identification of the individual responsible for the hosting service, the doctor, the subcontractors and the operator in charge of implementing the service or categories of people with access to medical data;
- – information pertaining to the financial situation of the candidate and his or her subcontractors;
- – provisional reports of hosting activity.
Finally, the communication of information is a process that depends on the environment; that is:
- – spatial, physical, sensory and temporal contextualization;
- – positioning and structuring of human relationships;
- – development and emergence of norms and codes;
- – identity expression of actors;
- – establishment of relational referents or qualification of relationships.
For this reason, in light of the information available in these books and others in the same line, we have been able to distribute the environmental parameters into four precise domains whose order is as follows:
- – structural and technological;
- – strategic and methodological;
- – organizational and regulatory;
- – relational and cultural.
Our theoretical framework is thus based on these four environmental parameters, which must not be static or isolated from one another so that the complexity of real life may be taken into account. It is our belief that good analysis and rigorous deliberation have everything to gain by being considered as parts constituting a whole, all from points of view interpretative of an incommensurable complexity, with these parts feeding into one another and in constant interaction.
2.3. Development of the ethical analysis space
Any IS must be based on a clear and precise end purpose that determines the moral and social needs of the tool in relation to its situation and context. This end purpose develops a strategy and recommendations to fulfill these needs. It evolves with the adapted strategy. The end purpose of an action is its “why”, the meaning in opposition to its “how”, to the mechanisms or functions it puts into play. It is seen as self-evident when a person undertakes to do something that a result will be obtained. This obviousness leads to the interpretation as “purposeful” of the action observed by another person; what does he or she want to do? What is the meaning of his or her act? We think we are observing the end purpose, not simply in the action of a person but in the behavior or the structure of an organization, even supposed to be involuntary, if we can see in it a certain adaptation of means to an end. Where do our ethical considerations come from? How does the distinction between good and bad operate? These questions lead us to examine the ends. Ends do not simply guide human activities; they also find orders and adapt human efforts to their appropriation. Because of this, these ends also define states and duties attached to these states and qualities to the virtues required to achieve them successfully.
However, an IS is not just a tool that can be analyzed in isolation. It is intrinsically connected to the whole organization and to the policy and strategy of the structure using it. An ethical approach must seek balances. It makes it possible to put forward facts such as human challenges that are also aimed at better patient support, while maintaining the quality and motivation of caretaking teams and updating of what is available technologically.
In this context, we believe it is impossible to address an IS without discussing all the environmental parameters of real life that exist in the functioning of an establishment (see Table 2.1).
Any rigorous analysis requires creation and application of a precise framework, a space, in order to begin with coherent and fair fundamental principles on the subject. The philosophical approach of Emmanuel Kant in his Critique de la raison pure (Critique of pure reason) [KAN 81] expounds in depth on the position of the space he considers necessary to the thought process. All reflection imposes is a form of exteriority that can be constructed from this space [LAC 06].
From this perspective, the idea of “space” proves conducive to expression and debates, the sharing of experiences and the acquisition and appropriation of knowledge, beginning with scientific and technical knowledge. It favors critical judgment and the assumed exercise of liberty in the face of the truth of others. The purpose of this space is to become a place of convergence or “crystallization” of all ethical initiatives applied to healthcare in relation to the IS. This concept of space symbolizes the freedom of speech and openness of spirit illustrated by
- – multdisciplinarity and plurality of opinions;
- – favoring of a system of questioning rather than the search for a consensus.
For this, we have relied in part on the cindynic approach22 founded by Georges Yves Kerven in Eléments fondamentaux des Cindyniques [KER 95], which presents ethics within organizations as
- – a “technology for structuring cindynic hyperspace” ;
- – a basic questioning of end purposes, values and rules;
- – a strategy of common agreement on the fields of activity and the rules of behavior of members of the company in their relationships with each other and external actors;
- – a tactic for the addressing of delicate problems;
- – a self-referential mechanism constituting the ethics of conviction and a relational mechanism corresponding more to the ethics of responsibility.
Next we move on to the concept used by Höffe [HÖF 91] applied to the analysis of justice according to three “levels”. These levels were used by him to qualify more precisely the levels of assessment and legitimization of obligations and duties. For this reason, our ethical space is composed of three distinct dimensions applied to the IS system and its hosting structure:
- – an axiological dimension including values;
- – a teleological dimension23 describing end purposes;
- – a deontological dimension explaining rules, norms, laws, codes, standards and limits.
As we indicate in Figure 2.5, this three-dimensional space causes three plans with different natures and challenges to appear:
- – An organizational and technological plan bringing together structural, technological, organizational and regulatory aspects, similar to Mintzberg’s models and Shannon’s information theory, as well as that of Floridi, which
This space goes back to “practice” and is devoted to the application of rules and usages. It must concretize the end purposes established by the teleological dimension. This involves the means, procedures, provisions and approaches established to accomplish the “effectuation” of the objectives.
- – A strategic and political plan composed of strategic and methodological and relational and cultural criteria, as well as laws, legal texts and deontological codes.
This space can be characterized as “pragmatic”. It brings objectives to light that were already presupposed at the forefront but without being clearly expressed in a “normative” way. This plan also involves deontology, the function of which is the regulation of practices.
- – An ethical plan representing the characteristics of the four fundamental ethical principles [BEA 01] and the ethical challenges specific to the nature of the structure being studied. This space is “reflexive” in nature, and its mission is to provide the “legitimization” for any practice or norm, thus giving it a certain seminal connotation. This plan is oriented by values that serve as both normative and critical governing bodies.
This conception of an ethical space is also shared by Paul Ricœur24, who divides moral problems into three sections, specifically
- – ethics, which plunges a person into “the desire for self-accomplishment”, in which satisfaction is found. It corresponds to the “ultimate core of the moral problem” illustrated by values;
- – morals25, in which ethics must undergo the “test of moral obligation”. The individual encounters prohibitions and duties represented by rules, codes, norms and limits;
- – practical wisdom, in which the duty itself must pass the test of wise and prudent decision-making in the face of unique concrete situations. This can be manifested by the means and procedures put in place to achieve the desired end purposes.
We can see that the first two plans constitute the environmental parameters of reality, based on human exchange and sharing. This anthropological vision turns toward relationships between individuals.
Finally, with regard to the ethical plan, this will be broadly described during the first three parts but is also found throughout our research as a background framework. Ethics are thus continually required “to stay alert in its mission of legitimization, and led to mobilize its reflexive capacity in relation to values” [HÖF 91]. Considering all these definitions enables us to better situate the different aspects of informational ethics and the levels of sectoral study connected with them. This can be summed up in Table 2.2, illustrating a model of ethical analysis.
Table 2.2. Model of ethical analysis
|Levels of analysis||Plans||Content||Forms||Functions|
|Descriptive ethical||Organizational and technological||Means, procedures, provisions and approaches||Practice||Application and effectuation|
|Normative ethical||Strategic and political||Norms, codes and rules||Deontology||Regulation|
|Reflexive ethical||Ethical||Principles and values||Questioning on fundamental principles||Legitimization|
In addition, by picking up and applying the principal cindynic concepts, that is, the representation in five dimensions of the “hyperspace of danger”, we have been able to associate our ethical space with a plan called the “informative plan”26.
This plan is the result of the combination of two dimensions (see Figure 2.6):
- – a statistical dimension composed of historical memory facts and statistics. This is the information used to populate our databases for study;
- – an epistemic dimension incorporating representations and models based on facts. This is the knowledge bank that supports calculations. According to Piaget, epistemology can be defined as “in the first approximation as the study of the constitution of valid knowledge” [LEM 07].
This plan enables us to question ourselves as to which data are likely to be of interest for our study. Every researcher is led to ask himself or herself fundamental questions about the information being sought, the way in which to recover it, modes of data protection, the validity or value of these data, their form, their foundation, their evolution, etc.
This stage thus constitutes a fundamental preamble to any research project. For this reason, this plan involves the field of raw, unprocessed information, which we have added to our field studies and to the bibliographical research to which our ethical model will be applied. The collection of these data – effected via individual questionnaires, semi-directed interviews and the reading of literature – has concretely and numerically fed our ethical analysis space.
The joining together of four plans of study and five dimensions connects to form our “ethical analysis space”, which is vital for the analysis from an ethical point of view of raw data concerning the IS of a healthcare establishment (see Figure 2.7). It is on this analytical framework that our ethical model partially rests.
Finally, our ethical analysis space uses the three levels of modeling of classical antiquity as part of a study of the events, specifically
- – the “given state of being”27, represented by the informative plan;
- – the “perceptible world”28, illustrated by the grouping together of the organizational and technological plan with the strategic and political plan. It constitutes the environmental parameters of reality based on human relations;
- – the “objective reality”29, characterized by the ethical plan.
With these three spaces being formed, the scientific method can be summarized by:
- – the observations in the perceptible world of the given state of being (see empiricism);
- – a development of theories in the context of objective reality in order to model the phenomena analyzed;
- – an addition of associated mathematics to render the evolution of phenomena in time predictive;
- – a permanent pursuit of the collection of data for modeling to be dynamic and evolutive commensurate with new situations.
2.4. Presentation of the ethical model
A model is a simplified, quantified and rationalized representation of reality. It can be used to simulate, explain and/or predict reality. Its objective is to replace the study of a concrete phenomenon by that of an object constituted by its definition; that is, by the analysis of an abstract object. The model corresponds to a representation of the phenomenon that is at once simplified and complete. It exists only through its definition and cannot be worth more than that. As an abstract object correctly defined, a model offers us the resources of a logical reasoning between concrete, real and supposed facts. By nature, the construction of a model enables us to avoid difficulties concerning introduction. It is posed in a derisory manner and hypotheses do not have to be justified by considerations drawn from experience. There are no true or false models but only good or bad models according to a field of questions. It constitutes the basis of our “logico-mathematical analysis” [LÉV 54] translating a language common to the various actors involved in our study.
2.4.1. Ethical cube of an accepted contingency
The application of a model and of concepts leads to a rational and quantitative analysis of the principles to be implemented, which is attractive in its approach but relatively complicated to put in place [ALP 86]. The first approach to be used to understand a phenomenon is first to isolate it precisely. Thus, there is a division from reality, a pertinent framework that it is necessary to construct. A model helps to frame an analysis, targeting the actors, issues and dimensions of the phenomenon. Once the framework is completed, the elements to be studied appear. These must thus be put in relation to one another. This conceptual model constitutes a simplified representation that provides individuals with different ways of understanding what they are creating, their organization and the environment that surrounds them.
This exposure to a pre-established model gives the possibility of modifying our conception and attitude toward NTICs in healthcare, both individually and collectively, in a context of organization of treatment support. Modeling acquires the value of an objectification of reflection. It is presented as a clarification of the parameters involved in reasoning and constitutes the “link that exists between understanding and acting” [NOU 02].
This model-based approach seeks to give intelligibility, that is, meaning, to a phenomenon. In the context of our thesis, we have relied on the ethical analysis space constructed by us for the occasion and on the models by Beauchamp and Childress [BEA 01], Massé [MAS 03] and Vézina [VÉZ06], which we will examine later, in the development of our own model and theoretical ethical context.
For this, we have studied the design, setup and use of an IS in healthcare by investigating precise and concrete sectors. These constitute “justifications of reality”, true keys to examining reality represented by various domains such as structure and technology, organization and regulation, strategy and methodology and the relational and the cultural. It should be noted that these justifications have been constructed based on bibliographical research on the subject and on semi-guided interviews with certain individuals referred to as “experts”, including reflection groups on the subject and with IS actors (designers and users).
This model will be observed according to three aspects in interaction:
- – the first point of view, called the ontological (or structural aspect), considers the IS in its structure. This is the view of the “being” of the apparatus;
- – the second point of view, which is functional in aspect, considers the IS in its function. This is the view of the “doing” of the apparatus;
- – the third point of view, called the genetic (or dynamic aspect), considers the IS in its time evolution. This is the view of the “becoming” of the apparatus.
However, the choice of a set of ethics starts with the relationship to the subject matter, with the relationship to the meaning we give it in our encounter with and approach to the other and, finally, with the perception of the dimension of the inner person. The absence of ethics results in chaos, illustrating a “universe in which no Word comes to give meaning” [DHE 07]. We are facing a limited reality, which in philosophical terms is called a “contingency”30. It is not itself its own definition or sufficiency; it could just as well not have been. We are not experiencing a fullness of meaning rather we are in search of meaning. This contingency is thus a decisive stage in the progression of a set of ethics. It confronts human beings on the meaning of life and their actions, and on the very meaning they give to the world that surrounds them. This interpretation of contingency profoundly affects all the environmental parameters of real life. Our attitude toward contingency thus has ethical issues. If ethics are defined as the search for meaning, for fair action, the manner of understanding contingency will guide the set of ethics put in place.
Consequently, we can use this questioning as a tool of discernment and diagnosis for action. This instrument enables us to evaluate our sense of direction and to predict the internal logic resulting from this. The progression of this contingency route necessitates making a choice at every moment, avoiding a certain immobility in solutions where nothing is fixed. Ethics are revealed and developed according to the contingency model recognized and accepted. For this reason, we can reposition the concept of “accepted contingency” in our three-dimensional ethical space in order to end with the creation of an “ethical cube of accepted contingency” illustrating the path of ethical thought (see Figure 2.8).
In addition, we can emphasize a bond of kinship between model and metaphor: “metaphor is to poetic language what model is to scientific language” [RIC 75]. Better still, the model is the most profound part of a metaphor. Thus, modeling would be the very essence of metaphor. On the basis of these considerations, ethicists can see in this cube the cultural metaphor for the process of psychic evolution of every human being; the force pushing us toward knowledge and the meaning of things. This is reminiscent of another sort of cube, proportions and all; a stone dear to alchemists, the Philosopher’s Stone, which represented for them the stone of real and absolute knowledge.
The openness that recognizes the accepted contingency becomes an openness to the presence of the other with whom we are united. The way in which an individual reflects on existence, on the meaning of things and enters into a contingency will contribute to his or her entry into reflexive ethics based on values and end purposes. This acceptance of presence and openness to relationships enables us to be aware of the value of the things that surround us and opens us up to responsibility and to interdependence with our fellow humans. This contingency, recognized and thus accepted, becomes a capacity for wonderment and for service to the individual, leading to the legitimization of our ethical reflection.
Finally, human and social development progress through the daily act of ethical thinking by each person in his or her decision-making, more and more aware of “his universal shared responsibility for choosing ethics, which in the end makes him both the gardener and the fruit” [DHE 07]. Thus, based on questionnaires 1, 1' and 2, we can note the respective scaling of:
- – the teleological axis;
- – the deontological axis;
- – the axiological axis;
- – orientation toward service to the individual;
- – orientation toward openness to relationships.
These measurements, incorporated into the modeling of our three-dimensional “ethical cube”, will enable us to use a value to quantify the direction and thus the accepted contingency that results. The scaling of this accepted contingency translates an “ethical score” in the analysis surrounding the IS in medical imaging. One of the ultimate objectives of this model is thus to constitute an algorithm for the solution of ethical problems that can put this “ethical score” of the accepted contingency in numerical terms. This modeling will be applied as a part of the study of objectives and the production of an IS. Means will be designated as “good” or “insufficient” depending on an average that we have chosen arbitrarily based on the gathering of the data supplied by questionnaire 3.
2.4.2. Ethical model of information system in the doctor–patient relationship
Our analysis of ethical issues concerning IS in cancer care has led us to reflect on the major objectives of an IS in healthcare and thus more globally on the ethical challenges of a healthcare structure combined with health information that has become “multiform, which dematerializes and does not remain confined to one area” [TAB 10]. In this analytical context, the overall concept of “information” considers three dimensions that interfere with one another:
- – its physical and structural form and presentation;
- – its content, which is necessarily structured according to the meaning it conveys;
- – its usage, related to its communication.
Thus, a complete analysis of an IS tool is impossible without an in-depth study of the environment that makes it function, in this case healthcare actors and, more globally, healthcare structures. This goes back to questioning ourselves about the place and role of the IS within the carer–patient relationship. The interest of this model is to facilitate a complete analysis of an IS and of the human–machine interface, or infosphere31, which brings together both technology and ethics.
Given that the IS tool does not necessarily include a guarantee of trust32 for the people who use it, it is important that each participant be clearly identified and, at best, recognized as a correspondent. These observations imply the setup of an IS that considers these human and technical aspects. Technologies combine and interact with human beings; it is not technology that changes society but the appropriation by society of certain technologies.
For this reason, in order to be effective and consistent with reality, this model must be configured according to:
- – the content and services used and the sensitivity of information and operations;
- – the users of the IS, taking into account their situation and role;
- – the system, in relation to its functionality, morphology and behavior.
The objective of the infosphere paradigm lies mainly within the perspective of defining this model, which thus represents a tool to translate technical language into ethical language and vice versa. It facilitates the convergence of the “info-signal” of technology and the “info-significance” advocated by ethics. There is a triangulation of the doctor–patient relationship with a technological device that becomes a full partner in care management.
During the treatment of the patient by the doctor, the lifecycle of medical information is counterbalanced between the fundamental ethical principles characterized by social values and the environmental parameters of real life represented by rules and norms.
According to Bruno Charrat, director general of the Centre National de référence Santé à Domicile et Autonomie (French National Reference Center for At-Home Health and Independence):
…technological innovation is above all the successful convergence of a user’s desires (or needs), what it is possible to do thanks to technology, and what it is viable to design. Without this convergence, the solutions developed are not generally good ones; the products are obsolete technically, or difficult to appropriate by the user, or even inaccessible to some, and a potential source of discrimination.33
In these conditions, the ethical modeling of an IS “with a human face” necessarily involves this convergence, and this exchange of types for which we start from the universal, the abstract and the general34 to move toward the practical, the concrete and the specific35. This approach reflects both the environment in which the actors are involved in care management work and their social organization. All are seeking balance and harmony between the antagonistic forces of the universe. As emphasized by the Canadian anthropologist Constance Classen, “the human body (the singular) serves as a model of the cosmos (the general) and becomes a mediator between cosmic forces” [CLA 11].
In other words, we begin this model with a set of so-called “reflexive” ethics of legitimization expressed by a questioning of fundamental ethical principles36 for actors, then continue with a set of so-called “normative” ethics of regulation, which consider deontology37 in the production of the IS, and end with a set of so-called “descriptive” ethics of application and effectuation in the form of practice38 with the means used.
This means a triple compromise: in the reflection between ethical values, in the production of an IS between rules and norms and in the setup and use of an IS between the means and procedures contained in the “justifications of reality”. This idea of compromise comes into play when multiple justification systems are in conflict. According to the book De la justification by Luc Boltanski and Laurent Thévenot [BOL 91], the basic hypothesis is that no society has a single system of justification of what is fair or unfair. Each person perceives justice and injustice in light of his or her interests (depending on whether he or she is religious, a unionist, an ecologist, etc.). The problem with compromise is that the common good cannot be obtained through unitary justification, but only by intersecting multiple values. The compromise is thus essentially linked to pluralism of justification; that is, to the arguments that people put forward in conflicts. It therefore falls between rival requirements arising from these different values. Conflicts are resolved within a homogeneous order, a closed-off space in which individuals recognize one another and speak the same language. According to Ricœur, this resolution is linked to “practical wisdom” [RIC 90]. Ultimately, it seems that the common good is characterized by a compromise between the rules and rival values that cover various sectors of activity and worlds of action.
Thus, our ethical model can be populated as well in a more materialistic sense by computer specialists and information technologies as in the opposing, more spiritual sense by healthcare professionals, philosophers or moralists. To function and harmonize these two domains, which are utterly opposite at first sight, our analysis framework must fulfill a single major and fundamental prerogative: it must place the interests of the patient at the center of all recommendations and actions that are technical and ethical in nature, while also considering the expectations and requirements of the healthcare professionals and the IS designers, who use the IS and cause it to function. The IS tool must correspond to the real needs and expectations of users. The actors or subjects involved in the design of an IS come from different disciplinary and cultural universes, hence this necessity to turn to mechanisms of comprehension.
Moreover, information used in design is generally unstructured. It is sometimes difficult for the IS designer to have access to information that is both complete and pertinent. Interaction with other actors is, therefore, of the essence in order to make up for this lack of cohesiveness. In this context, it is clear that the role of cooperation is of primordial importance in the process of designing IS tools to develop a mutual and interdisciplinary language between these individuals.
We will thus translate these different expectations by applying them to an ethical reflection based on the four universal principles. This ethical reflection results from a lack of satisfaction, and a desire, and thus an expectation. In this, we have also drawn inspiration from the concept by Roland Barthes [BAR 70], which translated communication by introducing a transmitter with ethics (composed of values, “ethos”), which transmits a meaningful message (endowed with meaning and semantics, “logos”) to a receiver, which receives it with emotion (endowed with sensitivity, “pathos”) [RIG 03].
In these conditions, information must be the subject at all times from its transmission to its reception and subsequent diffusion, to the rules of ethics, even if these are sometimes obscure.
I see, at the bottom, the development of ethical norms from a concrete and practical point of view, with these norms being themselves the result of enlightened discussion not based on preconceived notions or prejudice. They are, as Descartes wished, provisory and always able to be reexamined [CHA 98].
For this reason, these expectations and requirements can be expressed throughout the modeling of information39 by establishing three types of filters, arising from the doctor–patient relationship as well as the IS designer, and vital to medical decision-making based on an ethical IS:
- – perception filters, acting on the capture and storage of data40;
- – design and implementation filters, impacting the process selection for the conversion of data into information41;
- – utilization filters, targeting direct communication and the modeling of information leading to knowledge42.
These filtering processes43 are strengthened by the fact that the transmitter and the receiver rarely have the same focuses of interest and concerns. What is said by one is not necessarily heard by the other. Research in cognitive psychology has shown that individuals are never neutral. They filter, decode, select and reinterpret what they receive. In this context, epistemology is used to design an anthropology, which is a primary condition of ethics and becomes part of a loop in which each stage is necessary to the others. By applying our ethical analysis space in the infosphere, we can follow the conversion of data into practical wisdom (see Figure 2.9).
Moreover, this direct communication supplies the so-called “tacit” knowledge44, which is highly personal in nature and difficult to formalize. This knowledge includes a technical dimension that corresponds to personal aptitudes, “savoir faire” and a cognitive dimension encompassing the ideals, beliefs, perceptions, values and models of thought rooted within us. Although this knowledge is subconscious and difficult to communicate verbally, it is possible to acquire and communicate it through shared experience or observation.
We can distinguish the two dimensions of this knowledge: the technical dimension, which deals with the aptitudes and talents encompassed by the term “savoir faire” or “know-how”, and the cognitive dimension, which refers to mental models, beliefs, perceptions, ideals, values and emotions.
For its part, the modeling of information will contribute to knowledge referred to as “explicit”45, which is expressed in words or numbers and will be more easily shared between individuals by verbal or written means. It maintains a complementary relationship with tacit knowledge. There are two subcategories of explicit knowledge: “codified explicit knowledge”, which is found in documents or databases; and “personalized explicit knowledge” or “practical knowledge”, which is not recorded and is transmitted verbally. Knowledge is constructed, which requires frequent interactions between the members of an organization. In other words, the organization develops knowledge on the initiative of individuals and the interaction that takes place within a group of people. Knowledge can be amplified and crystallized in this group through dialogue, discussion, the exchange of experiences and observation. Groups provide the shared context in which individuals can interact with one another.
According to Takeuchi and Nonaka, the individual interacts with the organization through knowledge. The development of knowledge takes place at three levels: the individual, the group and the organization. The dynamic of the development of knowledge is a spiral process in which the interaction between explicit and tacit knowledge takes place repeatedly (see Figure 2.10). This dynamic facilitates the transformation of personal knowledge into organizational knowledge [NON 94, NON 06].
The basic premise of the development of this model is that the dissemination and creation of knowledge is not a linear phenomenon rather the conversion and creation of knowledge that takes place at the organizational level through a process of interaction between the two dimensions of knowledge: the tacit and explicit knowledge of individuals. Nonaka’s process of conversion and creation of knowledge takes place, in a specific context, through four conversion processes, specifically socialization, externalization, combination and internalization, as previously seen.
Thus, knowledge is converted through a process of exchanges that follows a spiral route. Although knowledge is initially created by individuals, it becomes organizational knowledge due to the conversion process described in Nonaka’s theory. However, conversion and creation also take place within a specific context, Ba, which corresponds to the space (space–time) facilitating the creation of knowledge. According to Nonaka [NON 94], this is a space (physical, virtual and mental) that makes interactions possible.
Moreover, to contribute to the understandability of a complex organization, Shannon’s model will represent a sort of reference schema based on which various theories of organizing and autonomizing information can be formulated and usefully interpreted. This is the case with the concept of entropy of information in which the movement toward knowledge contributes to the reduction of entropy, that is, the degree of disorder of the informative system. This knowledge contributes to the acquisition of “practical wisdom” [RIC 90] through which medical decision-making takes place causing effects on the therapeutic act on the patient (see Figure 2.11).
In these conditions, we can define our ethical model as being an ontological analysis46. The etymology of ontology goes back to the “theory of existence;” that is, a theory attempting to explain the concepts that exist in the world and how these concepts overlap and organize themselves to give meaning. Unlike for human beings, knowledge for a computer system is limited to the knowledge that it can represent.
By analogy, we have taken this term and applied it to our analysis of the architecture of knowledge as a form of representation of knowledge on the subject of a world. In this context, ontology constitutes the structured group of terms and concepts representing the meaning of a field of information, whether via the metadata of a space of names or the elements of a field of knowledge. Ontology in itself constitutes a data model representative of a group of concepts in a domain and the relationships between these concepts. Its objective is to model a set of knowledge in a given domain, which can be real or imaginary. It is used to reason with regard to objects in the domain concerned. In simple words, “ontology is to data what grammar is to language”. According to Gruber [GRU 93], it is the specification of a conceptualization that is an abstract and simplified view of the world we wish to represent. It is the basis for a formalization of knowledge. It belongs at a certain level of abstraction and in a specific context; it is also a representation of a shared and consensual conceptualization, in a specific domain and in pursuit of a common goal. It classifies the relationships between concepts into groups. To construct an ontological model, it is necessary to:
- – determine passive or active agents;
- – describe their functional and contextual conditions;
- – indicate their possible transformations toward limited objectives;
- – break them down into categories or other subjects;
- – group together a set of concepts describing a precise domain;
- – rank and graduate concepts and fields of study;
- – predicate in order to understand adjacent transformations and head toward internal objectives;
- – put things into perspective in order to embrace concepts.
A technology-centered approach cannot provide reliable results if we do not extend our gaze to include the people and processes involved in this IS. Thus, the purpose of this ethical approach is to bring out more or less graduated balances involving a certain compromise between the multidisciplinary actors involved in care management. Our reflections intermingle ethical principles and rules as well as the conditions of exercising medical “practical wisdom” in such a way as to incorporate the various dimensions that compose it. The objective is to develop a set of ethics of medical information capable of addressing the universe of healthcare data, information, knowledge and communication as a new environment: that of the ethical medical infosphere. It is with an eye to this that we have combined a system of values with this digital space in order to define a “digital governance” based on an axiology in the ambient space. These ethical values will be used to define the objectives of this space, which are propagated in all infospheres interacting with one another. From this perspective, the quality of an IS is a determining factor in its acceptability. It must be studied in particular depth ergonomically, making it possible to use the system in normal work conditions. Its use must be simple, and the time needed to learn it reduced to the shortest possible amount. It must lead “internal” users to assess the daily exercise of his or her profession both in technical terms and in the design of patient treatment, at the center of the ethical medical infosphere, and healthcare professionals must necessarily appropriate this development and act to use it.
It is our belief that this modeling of decision-making and the ethical concepts connected to it are themselves a force capable of influencing reasoning and causing sustainable changes in the process of medical decision-making.
Consequently, this model serves to remind us that new technologies and processes surrounding information are designed to be used in the service of the people who use them, and not the other way around – which often seems to be the case. It is on this basis that we are seeking to lay the groundwork of a set of ethics proper to healthcare IS. Our objective is to reconcile the medical world with that of NTICs by contributing a humanist dimension of medicine to the IS.
2.4.3. Ethical modeling of medical communication
The fundamental question we have asked ourselves during the creation of our ethical model applied to the doctor–patient relationship is as follows: What approach is best suited to equip healthcare professionals and decision-makers in their analysis of the morally acceptable limits of regulations aimed at creating healthy environments or behavioral modification strategies? These are flagship values that guide not only the actions of citizens but also the evaluations made by actors participating in the ethical discussion of the acceptability of these actions, in this case, criteria of judgment.
Computer ethics, far from being a form of informational realism, are in fact a form of informational idealism [FLO 10].
Most communication theorists assign great importance to the influence of time and place on the interpretation and use of information. In other words, knowledge must be made accessible, interpreted and put in relation to a given situation. In the medical environment, this means the work carried out on a daily basis by practitioners. If knowledge represents power, power is most probably attributable to the mastery of information. In other words, the strategic importance of information in a current socioeconomic context arises from the capacity of individuals to appropriate knowledge temporarily and, consequently, to appropriate the advantages that can result from it. Information can be both active (shaping) and passive (taking shape) when an object that is strongly marked socially exercises a direct influence on human behavior. According to Miège [MIÈ04], information is the cognitive and symbolic content of communication, whereas for Bougnoux [BOU 01] it is also content that, he specifies, is loaded with meaning, communication being a relationship solely capable of supplying sense. According to Wolton [WOL 95], information is the noble part, the “good content” and the values whereas communication is the shadowy part, interests, manipulation and dependence on the economic or the political. Given the unavoidable interferences between these two concepts, how can there be “information” without “communication”? [LOQ 95].
Conversely, communication does not necessarily lead to information. Communication resides more in the continuity and situation of human relationships, the weaving of contact or the organization of the community. Thus, information offers openness and progress to society through its potential for interpretation, whereas communication offers closure for a culture due to the obligation to save others and to its tendency to preserve gains and community replication. Communication and information play an indispensable and incompressible role in the functioning of organizations, and it is largely through IS manipulated by humans that each person is put in relation to others and made part of the world [TIS 99].
In communication, the understanding and interpretation of messages exchanged occurs based on contextual elements such as the existing situation, the appearance of the person speaking, the nature of the human relationship, the intentions of the main players and the reason for the encounter [DES 04]. According to the Knotworking approach, communication places the emphasis on human responsibility between the identified constraints of control and mutual trust. The concepts of data, information, knowledge, communication and organization form aninextricable knot and cannot bypass each other; therefore, they interconnect with one another more or less harmoniously [VAC 09].
This model of organizational communication facilitates reflexivity of the collective action involved in the doctor–patient relationship. It represents scientifically multiple points of openness that are at once epistemological, anthropological and philosophical for the study of medical communication. Its plan or objective may be heuristic, scientific or, sometimes, even pedagogic [CAR 12]. It may have qualities of popularization and mediation. This systemic model is applied to communication based on certain specific rules such as the definition of the framework, the observation of recurring generalized exchanges between actors, the study of strong and constant interactions arising from the context, the immediate schematization of relationships, the explanation of types of exchanges and systemic contextualization.
This modeling thus makes it possible to better understand the simulation, support, forecasting and assessment of communication between caretaker and patient. Its principal mission is to guide the scientific observation of the medical act, to explain it and to anticipate it based on a theory and a reference methodology. We are thus in a logical, pragmatic series of events leading to the success of the action. This model draws mainly on the works of Shannon, Wiener, Morin and Floridi. It is used to study the roles of communicational and informational structures of organizations and the epistemological, anthropological, philosophical and cultural elements in which these interactions take place [VAC 12]. Daily practices surrounding information and communication occupy a structuring role in organizations, that of mutual recognition of work and of actions taken [VAC 97, VAC 04]. The analytical model is neither a scholarly applied ethical tool nor an empirical study aimed at drawing up a portrait of all the ethical challenges raised. Nor is it an instrument offering a complete response to the legitimate questions with which healthcare professionals are confronted on a daily basis in the field with regard to the making of decisions with ethical implications. This chiasmus between an empirical investigation and the concepts proposed by ethical theorists helps to equip healthcare actors so that they can take on a responsibility that has become unavoidable, that of a structured justification of the ends and means underlying the doctor–patient relationship. This approach can be divided into two segments: the conceptual and methodological tools required to create a set of ethics on one hand and the description of the ethical challenges involved in a given situation on the other hand.
This ethical modeling applied to medical communication constitutes the basis of a new approach that is respectful of all actors and is oriented toward thought, conscience and human responsibility [DEV 95], as “the incommensurability that separates saying from doing, and practical writing, involves both the codes of proper conduct and the ordinary things in life” [LEN 95]. The socio-informational analysis model is intended to bring to light a cognitive system relying on ethnomethodology, which explains the relationship between professional practices, communication and evaluation. Thus, it has general functions that are actions of knowledge and sharing (such as theories).
This model of analysis constitutes a tool for the translation of technical language into ethical language and vice versa. It facilitates the convergence of the “info-signal” of technology and the “info-significance” advocated by ethics. It is applied to the infosphere, which brings together technology and ethics at the same time. The doctor–patient communication occurs in five very specific phases (see Figure 2.12):
- – capture: the objective of this phase is to recover primary data in order to create a base of raw primary data;
- – process selection: this stage represents the processing of raw data. It constitutes the digestion and targeted refinement of data, keeping only the most useful;
- – modeling of use: the goal of this phase is to introduce, use and adapt information received in a given situation and environment;
- – development of complex thought: this stage leads to an ethics of responsibility (recognition of a relatively autonomous subject) and solidarity (linking thought). It leads to an ethics of comprehension, enabling harmony and pacification in the doctor–patient relationship. It is applied at the time of the medical announcement of the diagnosis of the patient made by his or her doctor;
- – shared medical decision-making: the objective of this phase is to supply a precise response to the treatment planned. It formalizes a decision-making process regarding care, established between the doctor and the patient.
Comments on Figure 2.12:
- – Principle of non-malfeasance: what are the ideal conditions in which to tell a person that he or she has a serious illness?
- – Principle of justice: what information is necessary to transmit to a patient?
- – Principle of beneficence: what should be said to the patient’s family to avoid the use of intensive medication on this patient?
- – Principle of autonomy: what words and terms should be used so that the patient will understand completely the illness he or she has? What are the questions this patient is asking himself or herself?
- – Principle of autonomy: make the patient participate in the medical decision-making.
- – Principle of beneficence: provide well-being to the patient.
- – Principle of non-malfeasance: prevent the patient from experiencing harm or useless suffering.
- – Principle of justice: share among all patients equivalent available resources (time, energy, listening, money, etc.).
Each of these phases is associated with a specific filter. Among these, we can distinguish:
- – perception filter: with a questioning of the nature, authentication and conditions of capturing data;
- – design and formatting filter: with reflections focused on the choice form, clarity and hierarchical arrangement of information;
- – utilization filter: with questions focused on the usage, storage and hosting of information;
- – disclosure filter: with reflections focused on the diffusion and framing of knowledge for the patient;
- – decision-making filter: with a questioning of the medical decision-making shared by the doctor and the patient.
These filters constitute tools of ethical assessment and questioning. This set of medical ethics falls within the intention geared toward the end purpose and meaning of medical acts.
It is composed of the following:
- – descriptive ethics: this set of ethics applies to the organizational and technological plans. It is a set of ethics of application in the form of practice with the means, devices, routes and procedures implemented;
- – normative ethics: this set of ethics concerns the political and strategic plans. It is a set of ethics regulating the deontological aspect via the norms, codes and rules put in place;
- – reflexive ethics: this set of ethics applies to the philosophical plan. It represents a set of ethics of legitimization based on the questioning of fundamental principles and end purposes through principles and human values.
On the basis of this approach, we can associate with it a form of adapted ethical management. It is located in a sort of mediation, of the “between:” placed between the individual and action, between an individual’s interaction and its implementation and between a person’s professional and personal lives. Its action is, therefore, significant in terms of learning.
For this reason, it contributes to the optimization of the aptitude for change, individual performance and organization of hospital practitioners [PED 04]. This kind of human support is not intended to seek the “why” of things but rather to optimize the consequences and effects of medical actions.
Subsequently, critical self-evaluation results from this ethical management. This process is intended to help individuals make a judgment on their actions and to encourage the acquisition of situational knowledge in order to make good medical decisions. It tells the learner about the mental processes he or she activates in order to act and contributes to the learning of specific and cross-disciplinary skills. It consists of continuous observation of an action by the subject himself or herself, who then compares the activity he or she is in the midst of performing with the goal to be achieved. It calls upon the capacities for anticipation, regulation and self-correction. Evaluation represents a decision-making tool when it is incorporated into the communicational circuit.
Finally, this process leads to personalized medicine based on an ethical analysis model, a validation of adapted management and a self-evaluation of medical practices, composed of a high degree of openness, improvement of performance via the best transmission of knowledge from the healthcare professional and development of his or her autonomy.
Ultimately, as we have shown, human values are omnipresent in every dimension of medical communication between caretakers and patients. Multiple ethical challenges result from the conflicts that arise between these values, and an implicit ethical normality takes hold within this system.
2.4.4. Process of creation of practical wisdom via neo-Platonic systemic ethical modeling
Globally speaking, the notion of complexity is based on the principal idea according to which a system composed of different parts forms a whole that differs from the sum of these parts. Complexity falls today within a veritable movement of thought that invites us to restore the intelligence of complexity in our cultures and ways of acting. It poses a key epistemological problem for knowledge and action. Becoming attached to complexity means introducing a certain way of addressing reality and defining a specific relationship with an objective. This implies that the very organization of these components causes developments to occur, meaning that it produces specific properties that are not deductible from the knowledge of each of the parties. Analysis alone of the connections between elements is no longer enough. It now seems of primordial importance to develop new tools of reflection that will allow us to better understand and predict the mechanisms of recursive logic, feedback and phenomena of relative autonomy that make up an organization geared toward the creation of practical wisdom. The complexity of an organization requires three prerogatives:
- – central prioritization of the practice, teleology and thought process of interdisciplinarity;
- – redefinition of evaluation systems and the taking into consideration of human and social aspects;
- – systematic amplification in collective use of scientific auto-reflexivity based on exchange and dialogue.
This is a true challenge for knowledge from a theoretical and practical point of view. Thus, this process of development of practical wisdom makes it possible to shift from a state (A) of complex, disorganized and fuzzy knowledge to a state (Ω) of simple, structured and teleological knowledge (see Figure 2.13).
To achieve this simplification successfully, we must use the correct representation and modeling that consists of substituting a description of process for a description of status. This transformation is made via the intermediary of a neo-Platonic systemic ethical modeling process (Ψ, G, Φ) that includes:
- – the reflections of Leonardo da Vinci47, G.B. Vico48, P. Valéry, E. Morin and J.-L. Lemoigneon on (ethical (Ψ: Psi49), epistemic and anthropological (G: Gnosis50), pragmatic (Φ: Phi51)) modeling;
- – the construction of an ethical event (intentions, situations and actions);
- – Nonaka’s model of the organizational learning surrounding dialogue and practice (socialization, internalization, externalization and combination).
Systemic modeling is used to develop pertinent decision-making and legitimization methods by considering the ethical issues underlying the event being studied. In these conditions, modeling enables us to better understand our experiences of the relationships we have with others; in other words, to “transform our experiences into science with conscience” according to Leonardo da Vinci. This includes considering interactions that are both relational and cognitive with, on the one hand, methodology used to “learn how to do something” and, on the other hand, teleology aimed at “understanding why to do something”. Consequently, an improvement of tools of thought necessarily causes an improvement in decision-making.
By representing our complex knowledge using models, systems of symbols that we develop, via which we analyze and exchange, we end by mastering this knowledge, by making it simpler and therefore more intelligible. Symbolization is part of the purely formalist tradition of the Pythagoreans. According to Simon and Newell [SIM 71], the device of the symbol represents “the conjunction of form and relationship, answering the question: ‘What causes a symbol to symbolize’?” This search for practical wisdom contributes to a tendency toward very low entropy (S)52: that is, a degree of disorder that is virtually zero. Thus, we can see the beginnings of the knowledge that humanity has been pursuing since its origins. This process of ethical legitimization of the knowledge of the infosphere combined with the pragmatism of the real-life environment enables us to simplify our knowledge by taking it on both statically, through its environment, and dynamically, through its interactions. In these conditions, ethics constitutes, on the one hand, the value characterized by absolute transcendence and, on the other hand, the validity of pragmatic “immanence”53. According to Morin [MOR 04], ethics is inseparable from complex knowledge54:“knowledge that connects, expresses, and builds on itself as soon as a person decides to a responsible and connected citizen”. It seems of primordial importance, therefore, to redefine intelligence in order to face up to the complexity of the world that surrounds us, and of ethics itself.
By nature, a complex system is a dynamic system involving multiple interactions and feedback, within which processes occur that are very difficult to predict or control, which to the classical mind would have been unimaginable [MOR 05]. The complexity of a system takes on its full rigor when its representation becomes intelligible by basing itself on the paradigm of the Constructed Universe (axiomatic–inductive–pragmatic). Thus, this system incorporates a cognitive representation and a projective (or intentional) construction of reactions associated with teleologies we invent. It thus becomes projective or systemic (intention–conception). This open system is composed of an environment, functions, actions, teleology and transformations. Our model attempts to integrate and ensure the endurance of the reflections on this subject by illustrious researchers such as Aristotle, Archimedes, da Vinci, Francis Bacon, Descartes, G.B. Vico, Cl. Bernard, P. Valéry, G. Bachelard, J. Piaget, H.A. Simon, E. Morin and J.-L. Lemoigne. This model was populated in part by the reflections of da Vinci when he insisted that it was necessary “to do in order to understand, and to understand in order to do”. According to Blondel [BLO 93], “from thought to practice and from practice to thought, the circle must be closed in science because it is closed in life. Thereby … this double relationship of knowledge and action … is determined”. In these conditions, the intrinsic strength of this model lies in its character that is at once interactive, multidimensional, and actively oriented towards the meaning, knowledge, and teleology of an event. It is composed of three separate dimensions that connect and interact with one another (see Table 2.3):
- – informative dimension (G): infosphere;
- – environmental dimension (Φ): environment of real life;
- – ethical dimension (Ψ): info-ethics.
Table 2.3. Interactions between the dimensions of ethical modeling
|Informative dimension (G)||Environmental dimension (Φ)||Ethical dimension (Ψ)|
|Data/information||Structural and technological plan||Descriptive ethics|
|Strategic and methodological plan||Normative ethics|
|Knowledge||Relational and cultural plan Organizational and regulatory plan||Descriptive ethics|
|Data/information/knowledge||Four environmental plans||Reflexive ethics|
We have chosen to represent the state of complex and simplified knowledge by the Greek letters alpha (A) and omega (Ω), respectively, in relation to their symbolic aspect. In Christian tradition, A and Ω symbolize the eternal life of Christ, with alpha (the first letter of the Greek alphabet) translating the beginning of everything55 and omega (the last letter of the Greek alphabet) illustrating the end of the world56. This metaphor was taken up by the Jesuit Pierre Teilhard de Chardin to represent human evolution from A to Ω. In probability, omega corresponds to the universe of the possible, whereas in Euclidean geometry, it constitutes the center of a similitude, that is, a transformation that multiplies all distances by a fixed constant called its ratio. The image of any figure created by this type of application is a similar figure, intuitively “of the same shape”. Finally, traditional physics and chemistry use the symbol Ω to indicate a state of equilibrium in a given system. All this effectively translates the idea of the transformation of an initial complex and disorganized state into a final simplified and ordered state; in other words, an ethical evolution of human knowledge toward practical wisdom.
f: A → Ω (with y = f(x), where A represents the starting set and Ω the final set)(S ≈ 1)(S ≈ 0)
This ethical conversion ranging from A to Ω fundamentally transits via our systemic modeling (Ψ, G, Φ), which is manifested by a transit matrix M(Ψ, G, Φ). According to Quastler [QUA 56], we can see that in the representation of transmitted information, two systems never communicate directly, but rather, necessarily, via the mediation of a non-neutral third party, the channel, which is included in their communication.
Moreover, based on the description of this transformation of knowledge, we can also represent it via the flows of quantities of information that such a process of conversion involves, according to Claude Shannon’s theory of information. “The quantity of information (H) in a system is a measure of its degree of organization”, wrote Wiener [WIE 48]. According to Morin [MOR 04], information is a physical reality comparable to energy. The latter is “indestructible” (first law of thermodynamics), degradable (second law of thermodynamics), polymorphous (kinetic, thermal, chemical, electrical, etc.) and transformable (into mass or matter). Information is necessarily linked to the “concept of duplication and of noise” [MOR 77, 3.2I].
On the basis of this observation, the Shannonian measurement of the quantity of information liable to be transmitted or lost in a system suggests in effect an assessment of what seems to be the system’s complexity. Complexity assessment includes considering the probability distribution of cases of behaviors or possible states (or of entropy (S)), and thus their relative uncertainty (see Figure 2.14).
H(A) = quantity of Shannonian information in the complex message;
H(Ω) = quantity of Shannonian information in the simplified message;
H(A,Ω) = modeling channel with capacity presumed to go from A to Ω;
H(Ψ, G, Φ) = quantity of intentional information issuing from model (Ψ, G, Ω);
HA(Ω) = quantity of non-intentional information exogenous to the message, the “emersions” produced by the organization;
HΩ(A) = quantity of non-intentional information exogenous to the message, the “noise” due to equivocation of reception;
T(A,Ω) = complex message transmitted;
T(Ω,A) = simplified message received.
Symbolically, the receiver Ω of an item of simplified knowledge receives both less equivocation or “noise” (HΩ(A)) and more ambiguity or “emersions” (HA(Ω)) of non-intentional information than has been sent by the transmitter A of an item of complex knowledge. At first glance, this loss and this gain of non-intentional information have no reason to compensate for one another. However, insofar as this transmitted information is presumed to be indispensable to Ω in order for the behavior of the knowledge to be in accordance with its plan, we may see the expected behaviors disappear57 and witness the appearance of unexpected ones58.
From a mathematical point of view, we can translate this ethical simplification as follows:
- – Let A be a set of complex and disordered items of knowledge endowed with any basis written as BA = (e1, e2, e3).
- – Let Ω be a set of simple and ordered items of knowledge endowed with an ethical basis written as BΩ = (Ψ, G, Ω).
- – Let M be the passage matrix from the basis BA to the basis BΩ. We use this passage matrix to pass from the complex state (A) to the simplified state (Ω).
Thus, for a complex message α Є A, we associate a simple message ω Є Ω such that
In terms of quantity of information, this gives
H(M) corresponds to the information contributed by the change of basis (or change of representation). In other words, by the change of representation, we contribute the term H(Ψ, G, Φ).
Note that Ψ, G and Φ constitute dimensions that are by nature independent and that interact with one another. This means that M may tend toward orthogonality (meaning the optimization of its use) without ever attaining it.
We have thus defined the quantity of information carried by the item of knowledge and the change of representation of this knowledge:
Note: According to Quastler, the message transmitted and received (common to A and Ω) is a symmetric form. On the basis of this observation, we can state that
Thus, we obtain:
It is clear that the final message communicated via our ethical model has indeed been simplified and reduced, while still retaining the essence and meaning of the initial message transmitted. In fact, the quantity of information included in the message received (T(Ω,A)) is markedly lower than the amount that makes up the transmitted message (T(A,Ω)). H(Ω) has incorporated the non-intentional information HA(Ω) of the organization’s emersions and that of the ethical modeling H(Ψ, G, Φ) in order to summarize a communicated message received (T(Ω,A)), which is ordered, concise and teleological.
NOTE.– The quantity of exogenous non-intentional information in the message (HΩ(A)), the “noise”, naturally separates from the final message received. This loss of information, which arises from the equivocation of the reception, is a mechanical phenomenon that occurs with all transmissions of information.
It also suggests that the system should be able to obtain for itself a representation of the user with whom it is interacting, in order to adapt itself to this user. For its part, the user tends toward adapting himself or herself to the system from the moment he or she understands that he or she is dealing with a machine, which has the pragmatic advantage for the designer of simplifying certain aspects of the dialogue.
An organization is active, self-organizing and dependent on and connected to the environment. It also reacts according to the information. Information is a stable configuration of a symbol that is both a sign and signified. It helps the organization to adapt its behavior at all times via regulation, to transform itself and to re-balance itself in order to be in osmosis with the environmental parameters of the infosphere, info-ethics and the computosphere (see Table 2.4).
Thus, information gives rise to a permanent process of adjustment of the organization by channels (the system adapts by accommodation) and codes (the system adapts by assimilation) of communication relative to a plan. To represent the organization, we propose a model composed of a decision-making system, an informational system and an operating system.
Table 2.4. Environmental parameters of the infosphere
|Field of study||Infosphere|
|Strategic and methodological||Structural and technological|
|Field of study||Organizational and regulatory||Relational and cultural|
In light of this reasoning, we can state that the passage of data (A) to practical wisdom (info-ethics) (Ω) is translated by the equation of the following Shannonian quantities of information: data → practical wisdom (info-ethics):
This passage is accomplished via the channel of ethical modeling.
In addition, this pyramidal schematization involves control filters for each field of study (see Table 2.5):
- – visualization/perception filter and design/epistemological implementation filter;
- – cartographical and anthropological usage filter;
- – application, regulation and ethical legitimization filter.
Table 2.5. Structuring of pyramid of knowledge
|Level of knowledge||Nature||Content||Function||Filter|
|Visualization and perception|
(What is it?)
|Information: linked elements||Epistemology||Sentences|
|Design and implementation (How?)|
|Cartography and use (Why?)|
Schools of thought
|Application, regulation and legitimization|
(What is best?)
On the basis of this view of the evolution of our information society, we have developed our ethical analysis model applied to NTICs. It should be noted that the idea of using mathematics to describe the “sensitive world” seems to have originated with Pythagoras or the Pythagoreans [DIX 03].
In summary, complex thought binds epistemology and anthropology in a loop. Epistemology makes it possible to understand anthropology, which is a primary condition of philosophical thought that becomes part of a loop in which each stage is necessary to the others in order to result in a set of ethics. Finally, cybernetics relies on info-ethics to develop artificial intelligence or the evolutive knowledge of expert systems using diagnosis. In other words, these four macroscopic stages of society can be illustrated by a microscopic approach of an IS, manifesting as its design, setup, use and development. This type of approach motivates us to re-examine the epistemological perspective in which an organization of production and reappropriation of knowledge is used, as is the case with healthcare establishments in particular.
On the basis of these reflections, we can integrate our process of the creation of practical wisdom via the concept of organizational intelligence (see Figure 2.15).
The passage from concrete activity (alpha) to practical wisdom (omega) can also be characterized by the Erg dialogic (material) 59 and the Org dialogic (immaterial)60 involved in disorder–order generating interaction. The organizational intelligence that facilitates this transformation includes operation, information and decision-making. The cohesiveness of an organization constitutes the central element of the complexity of an event or situation.
It seems necessary to orient ourselves toward “poietic” 61 knowledge (according to Ménon and Morin), which is intended to be heuristic, functional, geno endogenous and sfumato, that is, which links and opens. This active linking constitutes the fact of relearning to observe, develop, think and act; to compose the recursive loop, always repopulated with knowledge and reflections, with the knowledge of knowledge. Thus, the knowledge of knowledge requires complex thinking [MOR 06], which necessarily requires the involvement and connection of the infosphere (informative dimension (G): information); the environment of real life (environmental dimension (Φ): operation) and info-ethics (ethical dimension (Ψ): decision-making), moving ceaselessly from one into another. The passage from alpha to omega necessarily includes the linking of the pragmatic (reasoning62) and epistemic knowledge (interpreting63) and ethics (modeling64) surrounding an event. If the pragmatic aspect calls for ethical analysis, ethics goes back to epistemological study, which calls upon and activates reflection on experiences, which expresses the pragmatic65. The organizational intelligence of complexity brings together separate data, information and knowledge in order to tend toward practical wisdom. This intelligence of reality represents a reconstitution and translation of this reality by a human mind, which is made possible by multiplex organizational units (MOU), a metaprinciple representing a radiant core that centralizes, organizes and links the triangulation (Ψ, G, Φ). This MOU translating “doing and thinking” connects and integrates the “doing”66 of the real-life environment with the “doing well”67 of the given state and the sensitive world, and the “doing what is right”68 of objective reality.
The intelligibility of an organization’s actions possesses the capacity to maintain and to maintain itself (auto-regulation); to connect and to connect itself (auto-reference) and to produce and to produce itself (auto-poiesis). Thus, the formation of practical wisdom via organizational intelligence extends to a decision-making system.
For this reason, in light of this analysis, it seems indispensable to bring to the heart of healthcare organizations in particular, philosophy, sociology and ethics, which are responsible for producing the conceptual tools leading to practical wisdom.
2.4.5. Ethical inductive algorithmic governance (Ψ, G, Φ)
A mathematical algorithm is defined by a sequence of stages and instructions that can be applied to data. It generates categories of information filtering and data exploitation, examines models and relationships and, in general, aids in the analysis of information. The algorithm for the ethical management of data evolves with datasets that cross it, with the attribution of different weights to each variable. Placing an algorithm at the center of expert system models, as is the case in the medical field69, leads to questions about the faithfulness and fairness of the medical decision-making algorithm and filtering mechanisms.
The algorithm will structure medical decision-making, which will give rise to major ethical issues around algorithms processing and analyzing data.
If an algorithm can inform you before your doctor does, and without completely understanding why, that you have an increased probability of having cancer, why deprive ourselves of this?! In the end, big data analyses are tools that cannot be substituted for the understanding of scientists; they draw attention to correlations detected so that these scientists can then search for causal explanations [BLO 13].
Those who develop data utilization models must also show the scientific interest of doing so and the difficulties that arise when we wish to make data anonymous and quantify the dangers to which we expose ourselves by sharing the data.
Let us take the example of a type of algorithm used in medical imaging technologies, aimed at representing human and biological structures on a computer in a precise manner to improve the diagnostic or therapeutic perspectives of illnesses. One of the many ethical questions brought up by these algorithms is the risk of producing false-positive70 and false-negative results71. Thus, these algorithms include a vital element of value judgment and, consequently, a set of ethics. The designer is led, thus, to make a compromise between minimizing false-positive results and the number of false-negative results72. This compromise will inevitably be based on a value judgment. Generally, designers choose a reasonable value for the threshold or parameter setting of computer software. The user bases his or her decisions on the output of the software results, which have been generated on the basis of a set of parameters based on the ethical hypotheses established by the software designer; hence, the necessity for these ethical hypotheses to be similar to those of the user.
For this reason, the design of an algorithm must help the user to choose the circumstances in which it is located. It is, therefore, vital for the IS designer to allow the user to specify the ethical parameters and, at the same time, to give him or her the responsibility for defining the default status of the software.
Moreover, from a macroscopic point of view, Moore’s law supposes that: “the more technological revolutions increase their impact on society, the more ethical problems increase. This phenomenon occurs due to new opportunities for actions being enabled, actions for which ethical policies will not have been developed” [MOO 05]. Thus, the more the technological revolutions increase, the larger the quantity of data becomes. The formation of this big data (A) contributes to the increased complexity of algorithms and entropy (S) (degree of disorder) of the data diffused, causing more ethical problems through their use (see Figure 2.16). To counterbalance this phenomenon, we believe it is necessary to apply our system of selective ethical ranking (Ψ, G, Φ) to transform big data (A) into info-ethics (Ω).
Now, the exploitation of big data can effectively be translated as: “an instantaneous search for essential information, its inclusive analysis without prior value judgments, the reproduction of effective mechanisms previously observed, and the production of new information that is directly useful in the current situation” [MAL 13].
It is here that big data moves away from the “traditional” Cartesian scientific knowledge, which advances mainly by deduction: from a hypothesis, we logically deduce a consequence that we then try to test in order to verify. In this context, big data is processed via induction73 by generalizing a phenomenon observed, even if this phenomenon is observed only once.
Our ethical modeling (Ψ, G, Φ) can be likened to ethical data mining using algorithms intended to cause the emergence of new information, referred to as info-ethics, via the analysis of a large quantity of data. Reducing the quantity of information is at the heart of an ethical dilemma. Is it necessary or not to deliberately lose information in order to regulate it and make it functional (info-ethics)?
If we consider the model created by James Clerk Maxwell, who used figures from Willard Gibbs74 to establish a three-dimensional image of energy (Z), entropy (X) and volume (Y) of the thermodynamic surface, we can see that energy diminishes when volume or entropy increases. On the basis of this, we can put forward the idea that free energy (G) will be high when entropy is negative and volume is small. In other words, we believe that a process of precise transduction (characterized by an efficient reduction of data, filtering out only what is essential and useful) will contribute to the development of an ordered and ethical system in which entropy is negative. In these conditions, it seems of primary importance to reduce the overall quantity of data in a message in such a way as to maintain the usefulness of the data transmitted.
Moreover, the number of operations necessary to process a quantity n of data must not increase too quickly with n. Algorithms acceptable for small amounts of data (e.g. with a variation of n2) take too much time in the domain of big data. Sampling methods in which all the data are not read enable a variation lower than n. The optimal complexity of algorithms is translated by n log n (2).
We admit by hypothesis that:
M(Ψ, G, Φ) = sampling = selective ethical ranking
Optimal complexity of algorithms = entropy of use (S)
So, expression (2) means that n log n = S = A × (1 – M(Ψ, G, Φ))
If A = all the complex and disordered knowledge transmitted = big data = n (quantity of data processed), then we get:
We saw previously that if entropy (S) tends toward 0, then M(Ψ, G, Φ) tends toward 1 :
Thus, when entropy (S) tends toward 0, the big data (A) processed tends toward 1. This means that the most optimal degree of simplification of an algorithm for the processing of complex data (A) yields a degree of disorder (S) that is almost zero.
This result confirms the fact that our passage matrix M(Ψ, G, Φ) does indeed make it possible to cause a complex message A to change into a simplified message via selective ethical ranking, without losing the meaning, end purpose and thus ethics of the initial message:
Finally, our ethical approach dovetails perfectly with the work that has been done on the inductive algorithms at the center of big data technologies. Inductive algorithms must be combined with a reward (or convergence) function that evaluates the benefits of new inferences and, thus, limits the number of them. As with ethical progression, there is no single and universal inductive solution to a given problem. However, it is commonly the case that a reduced number of processes respond to a particular end purpose. As with an ethical process, the most optimum inductive algorithms are evolutive. They improve by adjusting their ways of processing data according to the most pertinent use that can be made of it.
To develop swift inductive algorithms, it is vital for the processing of data to be anticipatory and contributory. For this to be the case, the exploitation of big data must convert these data as soon as possible into info-ethics that can be exploited during subsequent periods. Thus, our selective and inductive ranking transforms a large quantity of data “in expansion” into information that is “comprehensive” in form, more flexible and less voluminous. Rapidity allows a mechanism to focus on essential and meaningful data while remaining iterative; that is, this processing algorithm can be stopped without losing results. Info-ethics is rapidly accessible and can adjust itself via an ongoing process.
2.4.6. Toward a selective ranking of medical data
During this time of exponentially increasing volumes of information – big data, e-health and m-health – the ranking and selection of medical data seem fundamental, necessitating the adaptation of a management strategy for production of databases that distribute data among various storage categories to optimize the performance achieved by the user. This process relieves the management constraints associated with data placement. For this reason, digitized medical communication, in addition to its informative value, now faces the challenge of restoring the trust of the actors involved in the patient’s circuit while optimizing treatment support. An added value of medical communication via an IS consists of transforming these data into information by giving them another dimension through which to alleviate, modify and amplify the perception that reception may yield.
Although medical information brings together objective data, with the shift to medical communication including their ranking and selection, as may be the case for initial clinical constants75, we re-enter the area of subjective knowledge, in which the healthcare professional decides to prioritize and diffuse part of the information on these constants to his or her patient in order to improve the latter’s understanding. In other words, a metamorphosis of epistemological data and information takes place into knowledge associated with anthropology and the experiential background of the individual. Thus, the communication of medical knowledge exceeds objective data alone by favoring certain items of data and information above others. For this reason, it seems more precise to use the term “medical knowledge” rather than “medical information” when speaking of medical communication. We can argue for and illustrate these reflections by taking the example of the content of a medical consultation pertaining to a patient composed of the following: relative administrative data, the reason for consultation76, anamnesis77, initial clinical constants, initial clinical examination, history/allergies78, treatments in progress79, latest constants after the undertaking of treatment80, diagnosis and final treatment. Potentially, the person responsible for the IS may have the ability to view all of these data (administrative and medical). Only the initial clinical examination, the latest constants after the undertaking of treatment, the diagnosis and the final treatment are the domain of the physician; the rest can be carried out by a paramedical staff member (delegation of tasks). For his or her part, the patient has access only to the reason for the consultation, anamnesis, history/allergies, treatment in progress, diagnosis and final treatment. The billing department should have access only to administrative data pertaining to the patient. However, as emphasized by Dr. Loïc Etienne 81, the fact that the patient considers accessibility to his or her medical data alongside healthcare professionals (doctors or paramedical professionals) as secondary, this reinforces the idea that hospital reports consider only a part of the issue, keeping silent on certain things that the patient would wish noted or investigated.
The ranking of data also calls now for a consideration of the intrinsic value of the information gathered. How should the value of a piece of data or information be evaluated and according to what criteria? To do what, for what purpose and with what objectives? What should be evaluated? [SIM 07]. The value of a piece of data is defined in the context of action. Although this value can of course be judged from the point of view of content, it can also be judged on the basis of duplication, variety and quantity.
The value of data is defined by its use and not by its nature, as well as by the service rendered for its user. It is proportional to the knowledge it includes and determined by the level of sharing, the quality and quantity of the exchanges made. After having estimated and determined the value of a piece of data, its evaluation becomes possible. Evaluating a piece of information also means determining the strategy for its diffusion: giving access to it at the right moment; transmiting it selectively according to the centers of interest and needs of users and determine which piece of data and information the IS designer must make available to them. In other words, what data are necessary in order to decide or to act?
Obtaining a practical balance within the IS between the improvement and an overload of data transmitted also assumes the optimization of the function of ranking and selection based on two variables:
- – The frequency of reevaluation of the attribution of data to different overall and specific levels of functional activity on the part of the IS. Consequently, if this re-evaluation is carried out too frequently, the overload associated with the movement of data in one direction and the other risks canceling out the performance obtained due to the movement of data on storage disks (SSD).
- – The volume of data to be included in the minimum storage unit and thus to be managed and moved within the IS. An overly large quantity of data will complicate and slow down the selective ranking function of the IS.
Our ethical approach is always based on the four ethical principles discussed earlier. The solution of the selective ranking of healthcare data seen through this ethical prism makes it possible to better understand the unstable equilibrium between the availability and the protection of data. This counterbalancing can tip one way or the other depending on context. The approach raises a series of questions to be asked beforehand: what are the objectives, challenges and meanings of this stage? What will I use as data? Partial or total data? How will I use it? Where? Among which users? More broadly, how can the heterogeneous mass of medical data accumulated and stored in an IS be exploited? What relevance does it have in relation to the uses, needs and expectations of healthcare professionals and their patients? Will selective ranking impair the initial informative value? Will the integrity of the final message be preserved? Is it part of a better use of the IS, of optimized medical communication and of an improved experience for the patient?
This ethical approach demonstrates that the selection of medical data is an action with a positive effect in terms of at least three of the four principles of Beauchamp and Childress [BEA 01]:
- – appropriate diffusion of medical knowledge among users (healthcare professionals and patients) guarantees the soundness and legitimacy of the action. Medical communication, and thus treatment, becomes more effective: principle of beneficence;
- – clear, precise, adapted and understandable prior information that guarantees the informed consent of the patient, who is able to deliberate, decide and act. He or she carries out an autonomous action: intentional, voluntary and independent, with understanding and without an external influence of control: principle of autonomy;
- – limited access to medical data depending on the profile and nature of the user improves data security, confidentiality and protection: principle of non-malfeasance.
This selective mechanism for medical data does, however, have a negative repercussion for the principle of justice, as the medical information transmitted is not the same depending on the user of the IS. The system imposes different (and therefore unequal) rules of attribution and access according to the type of person. This results, in a certain sense, in discrimination toward individuals, causing an imbalance of medical knowledge that calls into question the transparency of medical information. Healthcare professionals are on the whole favorable to access data but limited to the department in which the patient is hospitalized in the case of caretaking personnel or dependent on the user profile of the data for personnel working within the Direction des systèmes d’information et de l’organisation (Information Systems and Organization Management) [RAV 13].
Medical information is not intended to be distributed to all professionals working within a healthcare establishment, but a patient may need to visit several departments during treatment. This means that medical information is shared by a larger number of healthcare providers. To deal with this “potential loss of confidentiality”, some suggest the creation of a core data curriculum that would host shared information, with each department able to have access to its own data, which it would not share with other departments. This idea, which implies a ranking of medical data, approaches the limits of an overly fragmented view of the patient’s state of health and may have a negative effect on the patient’s treatment.
For the Vice President of the Conseil national de l’Ordre des médecins (French National Order of Physicians), Jacques Lucas, medical information included in the conclusions of the medical act must be presented in the digitized file for the coordination of treatment and be wholly known to the patient, who is the true owner of it [LUC 13].
In these conditions, the balance between availability, confidentiality and protection of healthcare data is proving difficult to establish. In our opinion, technology cannot provide a full answer to this issue. Deontology and the adoption of behaviors (not hosting nominative patient medical information on an Internet site or platform isolated from a healthcare IS, outside of a workstation and secured equipment; not transferring professional data to the home via unsecured Internet messaging or a removable external hard disk; regularly changing the work session password, etc.) by healthcare professionals are necessary to guarantee the confidentiality of data.
In these conditions, the use of an IS has repercussions for all actors involved in the life of the hospital: staff, patients, families and the publishers of the IS. It makes it necessary for IS designers to reflect on multisectoral questions such as standards, norms, rules and procedures82; good practice guides83; protocols, implications and important legal texts84 (conservation of data, hosting, authentication, identification, etc.) and the inter-relations between the daily use of the IS in varied work contexts, as well as its management.
Finally, the data are categorized and sorted according to the importance accorded to them and the questions posed by their use and diffusion. The simplification of the data transmitted results in a more efficient access and use, with better capture and greater security. However, it also causes reduced integrity of data. For this reason, the ranking of data simplifies the work of healthcare personnel but causes greater technical complexity for the IS designer in terms of process. Given that this selective ranking of medical data plays a major role in the level of complexity of the data and in its accessibility to users, it can be made a part of “medical organizational intelligence”.