Medical Information Systems Ethics

Jérôme Béranger

• Publisher: Wiley-ISTE
• Year: 2015
• Print ISBN: 9781848218598
• eBook ISBN: 9781119178262
• Edition: 1
• Topic: Computer Science
• Subtopic: Information Technology
• Index: Computer Science

The exponential digitization of medical data has led to a transformation of the practice of medicine. This change notably raises a new complexity of issues surrounding health IT. The proper use of these communication tools, such as telemedicine, e-health, m-health the big medical data, should improve the quality of monitoring and care of patients for an information system to "human face".

Faced with these challenges, the author analyses in an ethical angle the patient-physician relationship, sharing, transmission and storage of medical information, setting pins to an ethic for the digitization of medical information. Drawing on good practice recommendations closely associated with values, this model is developing tools for reflection and present the keys to understanding the decision-making issues that reflect both the technological constraints and the complex nature of human reality in medicine .

1
The Emergence of Medical Information in the Face of Personal and Societal Ethical Challenges

The considerable and ongoing progress made by medicine through applications of technologies and sciences suggests that we are moving toward a veritable “scientification” of the medical approach. These NTICs are becoming means of augmenting flows of information, exchanges, social interrelations and even access to programs, cases of cultural and social mediation notwithstanding. Services and tools are multiplying and being perfected but still are probably only in their early stages, causing real unease for both doctors and patients. Where will the human–machine fields of tomorrow fall, in relation to those of the doctor–machine? Certainly, within medical communication, a dialogue between a doctor, his or her patient, and the IS must now be taken into account.

In this chapter, we will establish why and how the sharing of medical information and its transparency has developed. This will also shed a more precise light on the distinction made between the terms “data”, “information” and “knowledge”. The inflation of medical knowledge and the brevity of its half-life make its control impossible for a single individual and demand a high-performance tool to access, acquire and manage it. This has resulted in the necessity of computerization for the sharing and exchange of data. This type of ethical debate applied to this information is an essential prerequisite for the comprehension, design and architecture of an HIS using it.

Of the information handled by healthcare structures, medical information – the objective of which is to describe the state of health of patients and the acts and procedures practiced on them – constitutes the most important information quantitatively and the most relevant qualitatively, as it is on this information that descriptions of care activities and production are based. It has become an integral part of the care process. All medical information poses the problem of its own legitimacy, of the duty to inform and of the right to disregard. It is a legal, technical, and ethical necessity, but there is a risk that medicine will shift from the dictatorship of the “unsaid” to that of the “everything said”, that is, from paternalism to “information abandon”; these two extremes can have serious effects on the way in which the patient will experience his or her illness.

1.1. An information-consuming society

The society of consumption is a civilization born in the 20th Century, the economy of which is no longer based on the production of the necessary but rather on the production of the superfluous. It is considered to be an evolution. The upheaval of the 20th Century, which begun in the late 19th Century because of the industrial revolution, has reversed the proportions by assigning greater and greater importance to the superfluous and less and less to transcendence. This society has radically transformed mankind, from Homo sapiens to “homo consumens”.

The world of consumption exists only in a representation that is perceived as reality. For this reason, objects consumed by individuals have no real meaning except as symbols. The term “society of consumption” is generally defined by inserting the idea of advertising as a tool bearing information on a product being sold. For a very long time, sales advertising has equaled the satisfaction of needs, with its objective being to satisfy the consumer’s desires. Because desire exists only in mental form as the projection of a fantasy, objects are only images of a satisfaction that exceed their actual possession.

Consumption is no longer a means of fulfilling our primary needs but rather of differentiating ourselves from others. In Western societies, consumption constitutes a structuring element of social relations. It is omnipresent, creating new social relationships between people artificially by inventing symbols, acronyms and codes. It shows how our societies have become prisoners of consumption, which has taken the place of morals, and in which the body becomes an object, and capital subjected to consumption is recreated artificially in the form of symbols [ROD 08].

This is why personal medical information has become the subject of commercial issues. Subjected to pressure from commercial societies, of which they are sometimes promoters, healthcare professionals are likely to venture into the use of systems for the dissemination and use of information concerning their patients “without respecting the rights of the latter or taking into account legislation on the matter or medical ethics, the whole of which constitutes a complex corpus” [DUS 00].

In terms of the commercialization of medical information, it is most often personal medical information or information derived from the same that is at the forefront, that is, information concerning identified or identifiable individuals. An identifiable individual is defined as “a person who can be identified, directly or indirectly, notably by reference to an identification number or to one or more specific elements proper to his or her physical, physiological, physic, economic, cultural, or social identity”¹.

In the pharmaceutical industry, medical information is vital for the research and development of products and for the marketing those products. For their part, insurance companies and mutual funds wish to offer their affiliates the best services, and companies are willing to invest in prevention surveys, for example, to reduce the risks of accidents, illnesses and absenteeism.

Thus, to prevent any possible spiraling commercialization of medical information, Law 99-641 of July 27, 1999 introduced in Article 40-12 a new Chapter 5(3) of the law of January 6, 1978 pertaining to the communication of personal medical information and specified that data “issuing from the information systems targeted in article 710-6 [L.6113-7 new] of the code of public health; those issuing from medical files held as part of the liberal exercise of healthcare professions; and those issuing from information systems of health insurance companies, cannot be communicated for statistical purposes of evaluation or analysis of healthcare and prevention practices and activities except in the form of aggregated statistics or patient data put forth in such a way that the individuals concerned cannot be identified”. There are no exemptions to this regulation except specific conditions assessed by the CNIL (Commission Nationale de l’Informatique et des Libertés, or National Commission for Data Protection), which specifically prohibits the interconnection of files likely to be harmful to efforts at anonymity.

In France and Europe, personal medical information is considered to be sensitive data, and the groupe européen d’éthique (European Group on Ethics) defines that this healthcare data “is an integral part of the personality of the individual and should not be considered exclusively as merchandise”.

Today, the supply of goods and services available is greater than the demand. This abundance of products has led humans to surround themselves inexorably with objects. Eventually, humans will swear only by them, progressively abandoning themselves to becoming ever more functional. Consumption is becoming obligatory. As soon as a consumer takes possession of an object, he or she sends an external sign to the people around him or her, thus acquiring a certain power in society. This society has a need to produce objects and, thus, to be able to destroy them in order to exist. This renewal amplifies the idea of abundance and increases our dependence on the tangible.

Moreover, similar to commerce, which knew how to make the customer believe that he or she was king, medicine will be forced to bend to this consumerist principle. Medical relationships will have to fall in line with this model so that responsibilities will be clearly defined and indicated. Even though it is becoming consumerist, the caretaking relationship is not yet fully codified as such, except concerning the minimum necessary in the right to information. Thus, the increasing propagation of information in society imposes a certain degree of legitimacy on this information for the user of the healthcare system [FAI 06]; this legitimacy has been entirely established by the appearance of this significantly different way of interacting between healthcare consumers and healthcare service providers. There is still no model contract for what the doctor–patient relationship will involve in reality; there is more talk of the risks inherent in this medical relationship than there is talk of the objectives and means imposed by it. For this reason, our society is creating ever more possibilities and choices, which are often contradictory. Now the individual must examine, sort and rank each object or item of information on a rational value scale with the goal of being able to make choices and decisions regarding healthcare.

This evolution of consumerism in the field of healthcare marks a significant development in patient demand. These patients naturally wish the way in which they are treated to be accounted for and no longer have blind trust in practitioners. Healthcare professionals have therefore been obliged to adapt their services and the way in which they work to take this new order into account.

1.2. e-Health, m-health, the Quantified Self and Big Data

It is the combination of audiovisual and computer technology and telecommunications that accelerates the progression of these new technologies. The Internet stands as the legitimate heir to the triple alliance of the telephone, television and computer. The 1990s saw the Internet made available to the public at large; nowadays, this telecommunication tool has become an instrument of information, communication and exchange that is inescapable from a professional as well as a personal and familial perspective. The Internet has traveled across the surface of the globe like a water lily on a lake: the farther it goes, the faster it grows, and it is in the process of turning our vision of the world upside down. This is a new way of working, with primary materials consisting of dematerialized information. e-Health is also proving to be a remarkable system for sharing internal and external knowledge, providing enlightened users with a true culture of sharing. It seems to be an accelerator of empowerment, that is, of patients’ management of their own healthcare status, with patients being more involved in medical decision-making.

According to Ewa Mariéthoz and Marika Bakonyi Moeschler [MAR 01], empowerment “enables patients to free themselves partially from the top-down decision-making of doctors in matters of treatment and to establish bilateral patient–doctor relationships based on communication, discussion, and negotiation”. For this reason, this technology is often considered to be an emancipatory technology. It is enabling the patients to become better-informed. However, a usage study indicates that the diversity and complexity of these technologies only partially confirms this perspective. Thus, the notion of the expert patient harks back to elements other than online information alone and sharing with the practitioner remains a vital part of the relationship. The doctor thus retains his or her authority as an advisor while encouraging the patient’s expertise with an eye to autonomization and therapeutic education.

Consequently, the emergence of the Internet in the field of healthcare has contributed to the existence of greater access to medical data for both doctors and patients. In these conditions, these NTICs have the power to act in-depth on social relationships, people’s beliefs and the very nature of knowledge, which also contributes to certain fears and uncertainties because of their multiple (and often complex) uses; their hard-to-measure impacts affecting very different populations and their information, which is not always controlled. For this reason, it is becoming necessary to be more aware of and to better comprehend the use of NTICs in the medical sector.

This new technology has brought about behavioral changes between the actors, ethical reflections and, thus, consequences, such as:

• – making it possible to access the whole body of medical informatio...

Table of contents

• Cover
• Table of Contents
• Title
• Copyright
• Introduction
• 1: The Emergence of Medical Information in the Face of Personal and Societal Ethical Challenges
• 2: Ethical Modeling: From the Design to the Use of an Information System
• 3: Uses of This Ethical Model
• 4: Ethics-Oriented Personalized Medicine
• Conclusions
• Appendix 1: Classification of the Justifications in terms of the Different Real-world Environmental Parameters and Fundamental Ethical Principles pertaining to the Major Objectives of an IS in Healthcare
• Appendix 2: Questionnaire 1: Designed to Analyze the Perception of Actors in Oncology about the Primary Objectives of an IS in Healthcare
• Appendix 3: Questionnaire 1ʹ: Designed to Analyze Healthcare Users’ Perceptions of the Main Objectives of an IS in Healthcare
• Appendix 4: Questionnaire 2: Designed to Study the Realization and Characteristics of the IS Tool, to be used by the Designer of the IS and to the “Internal” Users
• Appendix 5: Questionnaire 3: Designed to Analyze the Methods and Tools Put in Place to Enable the IS to Work
• Appendix 6: Environmental Parameters of the Knowledge Pyramid
• Bibliography
• Index
• End User License Agreement