1. Ethical Issues of Information Technologies in Health Care

Ina Wagner, Vienna University of TechnologyTo be published in: Encyclopedie de Bioethique. Ed. de Boeck, Ch., Brussels

2. Introduction

The health care system has always been a place for and target of debate and controversy. Bringing computer-support into the health care system reinforces this debate. It is shaped by a diversity of perspectives and interests and by the conflicts between them. This paper seeks to identify some of these conflicts and the underlying ethical problems.

The development of Information and Communication Technologies (ICT) reflects the changing nature of health care. The modern health institution is dense with medical specialties, technologies, organizational rules, safety measures, fiscal accounting and monitoring systems. Organizing diagnostic and therapeutic action is a complex task and health organizations are places of multiple work sites - "places where different kinds of work are going on, where different resources (space, skill, ratios of labour force, equipment, drugs, supplies, and the like) are required to carry out that work, where the divisions of labour are amazingly different, though all of this is in the direct or indirect service of managing patients' illnesses" (Strauss et al. 1985, p.6)

Computerization is one of the answers to the complexity of health work and adds its own momentum. It is driven by a multiplicity of actors. The resulting systems reflect a complex web of occupational hierarchies, work practices, professional perspectives and priorities. Apart from the health care professions themselves, each representing specific substantive and social domains, health administrators, insurers and legislators have a dominant voice. Computers are inseparable from their preoccupation with exploding costs, and many systems in use today reflect the idea to establish management criteria in the heart of the health professions (Feldberg 1990). In response to these developments, there is a growing international market for healthcare systems. With this an entirely different set of actors - computer companies, systems developers, vendors, Internet providers - enter the scene.

Understanding ICT in health care requires to focus on changes of work practice; in particular on how use of these technologies shapes social practices of ‘constructing’ health and illness and the planning and evaluation of medical intervention. The paper discusses these changes along five analytical viewpoints: personal interaction versus ‘disembedding’ accountability and the ethics of work standardization and ‘situated action’ privacy/confidentiality versus wider social and economic interests expert cultures versus the citizen as a stakeholder.

These viewpoints provide a framework for discussing ethical principles in the field of health care. While some of these principles form part of the current discourse in bioethics, the focus

on work practice brings in the additional perspective of an ‘ethics of work’.

3. An overview of systems and applications

Medical infomatics dates back to the 60's when computers were first introduced in hospitals in support of administrative tasks, such as accounting and reimbursements. Subsequently, the notion of the electronic health record developed, and, connected with it, a variety of ideas of how to use ICT to enhance the quality of care, to establish ‘evidence based medicine’, and to control costs. Networking computer systems and strengthening information sharing and cooperation between health professionals and institutions is seen as an important step towards those goals.

Today, there is a wide range of systems and applications in use in health care. At their core is the electronic recording of citizens' health data. In clinical practice records play a crucial role in distributing knowledge across occupational and organizational boundaries and in pooling this knowledge for problem solving in local settings. For decades critics have been claiming "that the 'progress of medicine' was impeded by the fact that the patient records were 'prejudiced, incomplete or noncomparable' and that they were catalogued, crossreferenced, and integrated only 'loosely'" (Anon 1950, cited after Berg 1999). The nineties saw a veritable explosion of initiatives involving the development of electronic health records.

An electronic health record ideally comprises the complete medical history of a citizen as well as non-medical information. The electronic health record follows the patient on his/her way through the health care system, with each treating practitioner reading, interpreting as well as adding collected information. The digital format allows including, in addition to textual information, images, voice, and even tactile traces. The idea is that creating structured and standardized electronic patient records, and connecting different health care sites through high-speed communication links will enhance the quality of the primary care process and facilitate data retrieval for management and research purposes. Currently, several European countries are testing the design of an electronic health card, a chip card holding administrative and/or medical data. Such a card may exist either as a practitioner held card, which the practitioner keeps and uses to access the electronic health record, or as a patient held card, which creates the possibility of a portable health record, through which the patient may give access to her/his complete or partial (for example emergency data) medical record to any practitioner.

In addition to electronic health records, systems in support of particular activities are in use, such as nursing documentation systems, care plans, and standardized protocols for admission and discharge, and for the diagnosis and treatment of particular widespread illnesses. In some hospitals, nursing staff use laptops or handheld computers. An increasing number of hospitals are equipped with laboratory information systems, with special messaging facilities. Some have installed advanced imaging technologies, in connection with Radiology Information Systems (RIS). These systems support the storage, distribution, communication, display and processing of radiographic image data. Images can be archived and organized in central units and be accessed and used co-operatively by locally distributed actors. Such a system can be used, for example, to send radiological images simultaneously to the treating clinician, so that while the radiologist is working on a diagnosis, the clinician can have an independent view of the images

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and also converse with the radiologist (Tellioglu & Wagner 1997). Software and ICT tools for medical specialists allow for the development of decision support systems, which strengthen the diagnostic capacities of individual practitioners. Such technologies can, for example, suggest diagnoses, provide reminders for check ups and preventative measures, or alert practitioners to side effects.

Networking also opens the possibility of telemedicine in which a practitioner can give a consultation without the physical presence of the patient. The practitioner may, for example, assist the citizen living in a remote area with a chronic illness. In several European countries pilot projects are in operation which connect the practitioner's consultancy with other professionals. Such systems can, for example, allow a practitioner to forward prescriptions directly to the local pharmacy. Thus a pharmacist could perform checks (e.g. for drug incompatibilities, the use of habit-forming drugs) and practitioners could also check if a patient has actually retrieved her/his medication. Multimedia technology (combinations of computers with audio- and video equipment) is increasingly used to support the remote monitoring of highly specialized tasks like, for example, the supervising of neurosurgery at a distance (Schwarz 1993). Citizens, healthcare providers and industry are all making increasing use of the Internet. Citizens are using the Internet for their own health education and participation in healthcare. They are becoming the consumers of a wide range of health information, goods and services offered on the Internet.

In aggregated form, individual clinical and administrative data constitute the key elements of large medical databases. Such databases can enhance healthcare evaluation, public health surveillance and epidemiology. They may be used, for example, to trace long-term effects of certain drugs, trajectories of particular diseases, outcomes of particular medical interventions, as well as to plot disease incidence. Medical databases also provide support for clinical and statistical research activities such as trials, literature searches and in-depth comparisons of research results (meta-analyses). Special applications and methods are available for performing searches and statistical analyses.

Most health professionals today are in touch with ICT, either as active users or as producers of data, which are electronically captured, processed, transmitted and put to a multiplicity of uses. However, some of these systems are still in an experimental stage, others are not yet successfully integrated into the everyday practice of health work. In particular the electronic health record is not widely accepted, despite large-scale research and development effort (Heath & Luff 1996). As Marc Berg argues, "the realization that the technical, social, and organizational complexity of EPRs (electronic patient records) in health care practices has been seriously underestimated is gaining terrain. So far, EPRs have not 'replaced' paper records at all: both modes of recording data exist side by side" (Berg 1999).

4. Ethical issues

Bringing ICT into an organization is not strictly a technical process. It entails a social process in which both the practice and the technology are being shaped, and it goes hand in hand with politically relevant changes in the social structure of health care practices - "professional tasks change, new professions develop, and new information flows generate new hierarchical

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structures" (Berg 1999). Studies have shown that ICT systems are more directly open to change through the interventions of users than is the case with most workplace tools (Clement & Halonen, 1997). As a consequence, experiences with these systems vary widely, depending on how health professionals and their organizations appropriate them.

The ‘social shaping of technology’ perspective (see e.g. Bijker 1995) is well suited for studying these phenomena, as it combines the ethnographer’s interest in a detailed description with a theoretical framework for explaining technological change in terms of the interaction of social groups. The reasoning in this paper is based on empirical evidence produced in a series of ethnographic studies of ICT use in different health care settings. Unfortunately few such in-depth empirical studies on technology adoption in health care as a social process are available.

The paper focuses on the value conflicts that may arise when ICT systems and applications are embedded in complex work activities and relationships. Some of these conflicts are to do with the nature of health work. As will be argued, they can only be understood by carefully examining the affordances and the limitations of both media - the 'physical' and the 'digital' - with respect to human interaction in general, and the reporting and evaluation of medical information in particular. Other conflicts are connected to the scarcity of resources, the exigencies of a modern health administration, and the growing importance of health care as an economic activity.

3.1 Personal interaction versus ‘disembedding’ICT facilitate a movement towards spatially and temporally distributed work. One of the characteristics of such work arrangements is what Giddens (1990) terms 'disembedding' things and people – ‘space’ is separated from ‘place’ and social relations ‘lifted out’ from local contexts of interaction. Automation is a ‘disembedding’ mechanism. It transforms social interaction into systemic relations. In observations of everyday work we find many instantiations of this effect.

While formerly most information was collected in personal conversations between doctor and patient, today medical decision-making is a spatially distributed process, involving numerous actors, among them nurses, psychotherapists, and various medical specialists. Many of these actors never meet face-to-face to discuss a case but each adds her/his own report, which is read, interpreted and integrated by the responsible practitioner. As Cicourel demonstrates, "obtaining information that could specify the cause of a patient's symptoms is a complex, iterative task. The diagnostician must integrate data about a patient from a variety of sources including laboratory and radiological reports and physical and medical histories" (1990, p. 221). As a consequence, health work is both, strongly interactive, experience-based and immediate and at the same time requiring constant co-ordination and alignment with the work of others across departmental and professional boundaries, through impersonal and highly abstracted communication channels and reporting procedures (Wagner 1993).

A specific example of this mixing of personal relationships with impersonal control mechanisms is a Dutch ICT system that connects general physicians and pharmacists. The system "allows for dose control of the patient's medication behavior, yet it does so by building in all kinds of control mechanisms behind the patient's back. In this configuration, the patient is basically conceived as a weak link in the communications between physicians and pharmacists.

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Patients no longer bring along their own prescription to the pharmacy and they are checked on whether they pick up their medication or whether they have medication from other physicians" (Berg 1999). An ethical issue here is transparency - systemic control works "behind the patient's back". Another issue is agency - the responsibility for retrieving one's own medication has been taken away from the patient.

Work in a modern intensive care unit highlights another aspect of the ‘disembedding’ mechanism. Like many other specialized units, ICUs are increasingly equipped with highly sophisticated apparatus, which continuously monitor the patient’s vital data. The intense care nurse needs to combine her capacity of reading embodied ‘signs’ (skin, respiration, etc.) with the interpretation of technically mediated data. Often one person remotely monitors the state of health of several patients at-a-distance. It is often argued that this may reduce health professionals' opportunities to read crucial 'signs' of an upcoming crisis at a glance, which a monitor may not be able to capture (Wagner 1995).

One might argue that these kinds of problems do not originate in ICT but reflect the complexity of society and the systemic nature of many transactions in daily life. However, ICT have a special role in these transformations, as they establish impersonal mechanisms in complex personal relationships and practices. Sources of information provided by highly sophisticated medical technology, as in the case of intense care, are by no means less valuable than the more embodied skills at reading 'signs'. The issue is that as the 'personal' becomes increasingly interlaced with the 'abstract', individuals can no longer rely on their capacity to establish trust in a spontaneous way. Trust includes the ability to interact with co-workers one does hardly know, to use information that has been generated by unknown others and that has been technologically mediated, to rely on the assurance that the storage and transmission of health data does not violate their confidential nature, etc. This, argues Giddens, is a general characteristic of modernity: "Personal life and the social ties it involves are deeply intertwined with the most far-reaching of abstract systems" (1990, p. 120). When health institutions become dense with machines and more and more activities are mediated by technology, the trustworthiness of the systems becomes an issue.

3.2 Accountability and the ethics of workThe health record plays a crucial role in ensuring accountability, which is the other side of trust. The health record is much more than just a repository of information. It is a useful template for making work visible and shareable. As such it structures the communication between health professionals and patients and makes the continuous, cooperative work of managing patients' trajectories possible (Cicourel 1990). Garfinkel (1967) has drawn our attention to the fact that these templates for self-reporting are not merely descriptive. They are records of a 'therapeutic contract'. One crucial aspect of documentation practices is to represent the interactions between patient and the clinic as a ‘normal course of affairs’ based on legitimate procedures. Lucy Suchman’s notion of ICT as 'technologies of accountability' is a useful way of understanding this dimension of electronic health records as "systems aimed at the inscription and documentation of actions to which parties are accountable not only in the ethnomethodological sense of that term (...), but in the sense represented by the bookkeeper's ledger, the record of accounts paid and those still outstanding" (Suchman 1994, p. 188).

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ICT strengthen this ‘accountability’ aspect of health records. Many authors have criticized paper records for their limited accessibility and incompleteness. Their electronic counterparts are potentially accessible immediately and potentially contain a complete health history. This allows health professionals to follow the complex history of symptoms, diagnoses, medical interventions and their effects. On a computer screen health data can be displayed in forms that more clearly highlight important details. Certain time consuming tasks (such as reading off urine containers and carrying out calculations) can be supported by real-time computer-based decision-support tools. Often, protocols and guidelines are integrated into the recording procedures. They act as reminders of rules and basic quality standards.

It is their potential completeness that turns electronic health records into the pillars of management practices such as 'managed care'. It implies the use of health data, many of them personal and confidential, for organizing care delivery and for controlling costs. So may protocols and checklists be analyzed and used for measuring the outcomes of particular medical interventions, for gaining an overview of work practices in a particular unit, etc. Regional health managers may use health records, analyzing the distribution of particular types of patients and diagnoses over hospitals, clinics and practitioners within a region, and use this information for re-allocating resources.

Accountability may be easier to practice on the basis of a complete and accessible database. One question here is whose accountability? We are used to thinking of doctors and nurses as being responsible for the quality of their work and the decisions they take. With the distributed character of ICT supported health work more and more actors are included in the ‘therapeutic contract’. The notion of accountability needs to be extended to them as well as to the multiple secondary users of health data. This also applies to health managers using data on the performance of individual health professionals for the purpose of ‘managed care’.

Completeness is a not an ‘automatic’ feature of a health record. Collecting data requires work. A substantial part of health data included in the record does not refer directly to the clinical situation, but is collected to satisfy other needs such as those of cost control and containment, planning, epidemiological studies, and other research. Often, current electronic record designs make nurses and doctors responsible for the production of standardized 'transportable' data for these multiple secondary purposes. They have to fill in coded forms, write explanations, take account of the information needs of management, etc. Also, to draw usable information from clinical records, much work needs to be invested in disentangling the data from their primary contexts, to fill in the gaps, and to interpret explanatory text (Berg, 1999b).

This raises issues that form part of an ethics of work: What kind of work other than the work directly related to the clinical care situation can be legitimately expected from health professionals? How does this affect their workload and their attention to their primary function as caretakers? Elaborate coding for the purpose of medical research or for administrative purposes may be in conflict with the information needed in the immediate clinical care situation. The ethical issue here is to carefully examine and evaluate both needs – those of secondary users for an instrument that supports evaluation and planning, and those of health personnel for a tool for effectively managing a patient’s illness trajectory.

A word of caution refers to the idea of the health record as being an accurate mirror of

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medical practice. This idea is based on a fundamental misunderstanding of the nature of health work and of the ways health data are generated. The production of health data is deeply entangled with the context of their use. Their completeness and specificity is directly tailored to that purpose. So may an 'incomplete record' be completely intelligible, sufficient and adequate in the clinical care situation. The pre-occupation of health administrators with completeness often reflects the perspective of secondary users, rather than the immediate needs of care taking. Also, once captured, health data cannot be treated as ‘raw information’. This becomes clear in the process of drawing usable information from clinical records, when many contextual cues that are crucial for the understanding of these data have been lost. The image of health data as “bits and pieces of an emerging story” of the patient’s trajectory is much more adequate than “to consider them as a heap of facts” (Berg 1999).

3.3 Standardization and ‘situated action’ICT systems development in the healthcare field is combined with the introduction of uniform coding systems and standard procedures. For example, a working group of the European Standardization Committee is dedicated to the task of developing standards for the electronic health record (CEN/TC 251, http://www.ehto.org). Standards and categories have far reaching implications for medical practice and it is crucial to better understand what they are, who makes them, and how they affect patients’ lives1. An example are chronically ill people, such as tuberculosis or diabetes patients, who live under a tight regime of categories and metrics.

It is important to make these and other regimes transparent and debatable, argue Bowker and Star (1999), since one of the main characteristics of standards and categories is their invisibility. In this respect, they are comparable to infrastructures – “they are ‘sunk’ into, inside of, other structures, social arrangements and technologies”, learned as part of membership, linked with conventions of practice, and invisibly support tasks (Star & Ruhleder 1996). As part of a system, standards tend to have longevity, which makes them hard to reverse. Furthermore, from the cases studied by Hanseth and Monteiro (1997) we learn that “controlling the standardization process and its outcome is hard”. The good reasons for the choices that have been made are not always made explicit, understandable and open to debate.

Standards are not neutral. 'Categories do have politics' (Suchman 1994), they reflect the perspectives and values of the people who define them. Each standard embodies an ethical choice, it valorizes some point of view while excluding others. The history of the International Classification of Diseases (ICD) is full of stories of conflicting views over which perspective on a particular disease should be taken as the ‘standard’. Once a standard terminology has been introduced, people start using it even if does not adequately reflect their thinking. As in the case of psychiatrists who “increasingly use the language of the DSM (a diagnostic code) to communicate with each other and their accounting departments, although they frequently don't believe in the categories they are using” (Bowker & Star 1999).

1 Classifications and standards are closely related, but not identical. A standard is any set of rules for the production of (textual or material) objects(Bowker/Star, 1999). Its main purpose is to make things work together over distance and heterogeneous metrics. A classfication system is a set of boxes' into which things (e.g. patient data) can be put. Ideally there are consistent, unique classificatory systems in operation, the categories are mutually exclusive, and the system is complete.

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Standards do not only apply to procedures, but also to the people who work under a regime of standardized ways of doing things: "The various ways people are enclosed, grouped, distributed, separated, and partitioned mark a related spatial organization of power/knowledge. These distinctions constrain our pattern of activity and interaction, and in doing so, they shape both our activities and us as agents" (Bush 1998). Marc Berg discusses the example of standard reporting forms in a Dutch clinic which tend to reinforce the hierarchical relationships between doctors and nurses: “Building a certain doctor-nurse order-sequence into an EPR thereby reifies that hierarchical relation on the shop floor. Technologies, in other words, contain scripts that lay out which actors are relevant, and what their respective roles are” (Berg 1999b).

A third characteristic of standards and categories is that they are formal constructs. They are introduced in support of the ability “to classify, index and structure for access and comprehension by abstraction and summary" (Robinson 1994, p. 14). Like many other formal constructs, they may be helpful in reducing the complexity of work (Schmidt 1997). However, taking procedural formulations and categories 'literal' as a step-by-step procedure to follow, or an exhaustive description of a problem, means to ignore that they are abstract representations rather than accurate descriptions of the activities and judgments unfolding in a particular situation.

One main effect of ICT development is the globalization of standards and classification systems. There are many 'good reasons' for reinforcing standardization in health care. The sharing of health data between spatially distributed health care units requires that the various systems in use can communicate with each other (technical interoperability). ICT has not only strengthened the use of standard terminology for coding diseases, medical procedures, prescriptions and nursing interventions. It also is a vehicle for introducing standardized reporting procedures in the form of protocols, clinical guidelines, pathways, etc. Ethical problems arise from the uses of standards and categories in the clinical situation.

An example of a standardized reporting procedure is this admission protocol to intense care in use in a Dutch clinic (Berg 1999). This is a form designed as a spreadsheet, covering one day, listing temperature, blood pressure and pulse graphs, and rows with respiration parameters, medication, fluid intake and loss, and so forth. These are all on the same page, in the same temporal format, so that interrelated changes are rendered visible. Some of these data, such as temperature and blood pressure, are gathered automatically, but have to be validated by the nurse other data have to be manually entered by the nurse. Another form allows entering information about the patient's progress. It consists of sections such as 'cardiac', 'pulmonary', 'abdomen', 'extremities' which are subsequently split up into separate fields.

Admission protocols such as the one described above acts as a script. It defines the relevant steps to take and the appropriate categories for reporting observations, and eventually even prescribes a specific sequencing of activities. In general, protocols and checklists 'formalize' and pre-structure information that has to be co-constructed by the participants in the clinical situation. Heath and Luff in their study of the complex documentation practices of general practitioners, have pointed at some of the dangers of formalizing medical work. They describe the ways in which doctors flexibly adapt their use of the medical record to varying circumstances as they arise: "The entries on the paper record card are tightly interweaved, they rely on a certain ambivalence to the recording of categories, particular vaguenesses in the entries and flexibility in the type of components which are entered. This flexibility is required

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so that readers can read the record 'as a whole' and 'at a glance'" (1996, p. 362). Use of the record is shaped by the social practices of reasoning in practitioners’ day-to-day work.

From the point of view of health administrators’ concern with quality assurance, protocols for clinical practice are powerful tools for establishing ‘best practices’, and also for controlling the performance and practice of healthcare professionals. This seems particularly relevant in the light of scarce resources, which have to be utilized with great care. Also, clinical personnel might not always find the time to further develop their practice according to the progress of medical knowledge. However, some people fear that in practice protocols reduce the scope of what health professionals actually care to observe and document. In particular the development of 'profiles' (e.g. patterns of symptoms) may be conducive to thinking in simple measures such as 'averages', and to synthesize data in ways that comply with images of regularity. This may reduce the tolerance for discrepancy and variation. For example, when 'averages' are interpreted as successful procedure, deviancies (such as complications and a prolonged stay in the hospital) may be seen as a failure.

One ethical conflict here is between standardizing medical practice so that it becomes measurable and comparable, can be evaluated and the outcomes be used for improving the quality of health care on the one hand, to support the kind of flexibility and openness to variation which is at the core of good medical practice on the other hand. Related to this is the conflict between the need to respect the competent judgment of health professionals and to publicly account for the effective use of resources and the observation of 'good practice'.

Another powerful force behind the globalization of standards is cost control. An example here is the effort of health administrators to make nurses’ work cost accountable. Putting nursing interventions on the bill, the argument runs, will make nurses' work visible and show its money value. As a consequence, care will not be considered something included in the hotel services a hospital offers, but a professional service. In their study of NIC (Nursing Intervention Classification System), Bowker and Star show that there are aspects of nursing which are difficult to capture in a classification scheme. They discuss examples of nursing interventions such as 'anticipatory guidance' and 'mood management', asking: "How can one capture humor as a deliberate nursing intervention? Does sarcasm, irony, or laughter count as a nursing intervention? To be measured? When do you stop? How to reimburse humor, how to measure this kind of care? No one would dispute its importance, but it is by its nature a situated and subjective action. A gray area of common sense remains for the individual staff nurse to define whether some of the nursing interventions are worth classifying" (Bowker & Star 1999).

The higher visibility of activities that are taken for granted and are often considered ‘residual’ is one side of the NIC. The other side is that precisely these invisible aspects of work such as nursing tend to escape categorization: “There are continuing tensions within NIC between just this kind of common' sense, and abstracting away from the local in order to standardize and compare, while at the same time rendering 'invisible work' visible” (Bowker & Star 1999). Background work such as the one done by nurses is vulnerable, argue Star and Strauss (1999). Bringing ICT and the associated standards and categories into nursing draws attention to the fact that what counts as work that is socially valued is an underdiscussed ethical issue.

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3.4 Privacy/confidentiality versus wider social and economic interestsMedical information touches upon an individual's intimacy and personal life. Patients may consider the more public storage of confidential information a violation or even betrayal of their unique relationship of trust with their doctor/nurse (Reiser & Anbar 1984). While many of the problems associated with the increasingly transnational flows of such information have been widely discussed and have inspired pertinent legislation, some aspects have been neglected.

The highly specialized diffusion of health data and their uses for multiple purposes requires a concept of privacy which takes account of those different uses and their legitimacy. This is expressed in the 'principle of ‘finality’. So may privacy be traded for certain collective goods that benefit the community or population at large. An example are uses of person identifiable health data for purposes such as risk assessment, epidemiological research, the planning of preventive measures, and the regulation of access to scarce resources (e.g. transplants or other costly life-prolonging technologies). However, also in such cases an ethical question may arise when the criteria underlying policy decisions affecting individuals and their lives are not sufficiently transparent or even biased. The ‘principle of finality’ therefore refers not only to the purposes for which personal information is used, but also to the ways in which this is done: What are the criteria underlying the evaluation of needs and the distribution of scarce resources? Are the methods adequate?

‘Profiling’ is not only done for purposes of public health. It also has an increasing commercial aspect, when companies use it for tailoring their products and services, and for directly addressing particular sections of the population. A recent example from the US shows pharmaceutical companies directly mailing suggestions for medication to patients that have been discharged from clinical care. This and the example of the Icelandic legislation, granting access to a sole pharmaceutical company to the anonymized health data of the population of Iceland for research and development purposes, underlines the economic value of personal health data. They have become an important economic asset and more and more instances are reported of such data circulating in the Internet and being used by private companies.

This leads to a more general argument. People leave more and more traces in digital media and increasingly "the 'trace' is the automatic product of any type of activity (acquisitions of goods and services, the use of pay-per view television), and therefore represented in the form of transactional data" (Rodotà 1998, p. 218f). Rodotà uses the image of a "specialized diffusion of personal information by a variety of parties, who displace the self in diversified, undetermined, elusive locations.' (1998, p.214) for describing a situation in which the individual no longer controls or even knows where, how and to which ends personal information is used. This diffusion of fragments of personal identities for different and sometimes unforeseeable purposes requires a radical change of the notion of privacy. Individuals must not only have the right to determine the sharing of information with multiple (unknown) others, but exercise control over which information is collected and digitized in order to circulate in varying networks.

This is particularly important in light of the tendency towards transforming personal information into goods. Since in networked systems, where the exchange of individual health data is common, health professionals have little control over secondary uses. Ethical practices are not well defined for disclosures to secondary users - such as managed care evaluators, insurance companies, etc. One option would be to extend an ‘equivalent principle to medical secrecy’ to these users. But practices may be difficult to control in a world where joint

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ownership arrangements are increasingly common among pharmacies, hospitals, and insurance companies and where data sharing among these entities will be considered standard business practice (Cushman & Detmer 1997).

One important insights in this context is that responsibility for privacy and confidentiality cannot be shifted to the technology. Although a variety of technical measures are available to achieve privacy and confidentiality, they are not sufficient in themselves. Organizational measures have to be developed such as formal or ongoing system assessments against security threats, security and confidentiality policies, data protection committees, user education and training programs, and sanctions for violations of policy. Studies point to the problem that these security resources are neglected in many health care organizations (Cushman & Detmer 1997).

Some of the concerns with secondary uses of data are expressed in the argument that personal data, and in particular health data, are ‘inalienable’. They form an intricate part of the person and his/her dignity. With reference to this principle, the European Group on Ethics (EGE 1999) recommends for example that employers and insurers must not be given direct access to an individual's health record. With regard to people's transactions in the Internet, the Group has formulated that "data related to the consultation of health information on the Internet must not be transferred to third parties or used for constructing personal profiles". Also, when individuals use the Internet for e.g. ordering drugs, looking at drug information, or searching for information about particular diseases, "data related to such transactions should be regarded as personal health data", and all confidentiality provisions should apply to them”. Recommendations such as these seek to adapt the notion of privacy to the exploding technical possibilities of diffusing and using personal data.

3.5 Expert cultures versus the citizen as a stakeholderICTs reinforce the notion of the citizens as stakeholders in their own health, who seek greater participation in their healthcare and therefore greater access to their own health information. This is an increasingly important concept, reflecting the movement towards a civil society in many countries and cultures. Current ICT projects such as the health card or Internet services emphasize the need to widen citizens' access to their own health data, to open up choices, and to give them a stronger voice in medical decisions.

In most European countries citizens have a right to know which health data are recorded and who uses them for which purposes. They also have a right to be informed about existing treatment. The electronic recording of health data may make it much easier to enhance the patients’ right to access their own data, or even to decide which health care professional has access to his/her data. The possibility of access may help patients to better position themselves as knowledgeable and competent participants in their own health care. An issue to be considered here is about which form of access to provide. A patient reading on the screen the information the health professional enters in the system, changes the nature of the information and potentially also the situation of trust. An example is intense care, where patients may be able to read the continuous measurements of their health state on the computer screen at their bedside. This may produce misunderstandings and anxieties, in particular if no health professional is present with whom to share these anxieties and with whom to discuss adequate

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interpretations of data. This is why in some countries patients only have access to their health data in the presence of a mediating and supporting health professional. This may not be the case when patients carry their own health information on a chip card. Also, a patient who has access to health information on the Internet and can e.g. order drugs, may feel encouraged to self-diagnosis and self-therapy even when this may be dangerous.

There is a conflict between the idea of expertise, which is based on high standards of professionalism and a strong hierarchy of knowledge on the one hand, the notion of the autonomous individual having the right to know and to be able to exercise a choice on the other hand. Trust in the health professional and his/her competence has to be balanced against the right to form one’s own judgment and to have independent access to knowledge that matters for one’s own health.

ICT touches upon this conflict between trust in the expert and autonomous judgment in a special way, since it is in need of users’ knowledge more than any other technology. Developers need in-depth knowledge of the health institutions into which the system will be embedded and of the work practices it will support and eventually change. Consequently, ICT systems and networks are not neutral to the social practices that shape it. They reflect the views of health work that have been inscribed in it by those who have participated in their design. Although ICT potentially strengthen the patients’ position, patients are rather marginally present in the current debates about how to further develop the participatory potential of ICT and many of the systems that are actually in function “tend to remove the patient even further from his/her own data than make those more accessible” (Berg 1999).

Advocates for and practitioners of participatory systems design have been claiming for a long time the need to ensure that all relevant perspectives are included in a system, since this will influence, for example, which health data are collected, how they are documented, or who should have access to them via the Internet or via inter- or intra-hospital networks. This approach to systems design requires to take citizens as experts of their own health seriously and to give them a voice (e.g. Clement 1994, Simonsen & Kensing 1994, Greenbaum & Kyng 1991). Again, there is a conflict between the notion of expertise and its valuation in society on the one hand, and inclusiveness and participation on the other hand. Participatory systems design presupposes respect for people’s everyday knowledge and competence as well as trust in their ability to voice their interests in constructive ways in a discourse that is customarily reserved for experts from health care as well as systems design.

5. Conclusions

At the roots of the ethical conflicts inherent in ICT use in health care are the tendency towards spatially distributed work, multiple use(r)s of health data, and the globalization of standards. Much of this is to do with the tensions between ‘local’ ways of coping with situational and contextual variation and the requirements of ‘global’ standards for evaluation and planning. These tensions are reflected in the debate on standardization. Standards are necessary for ICT systems to 'communicate' with each and for people being able to share health records across organizational and spatial boundaries. They are lying at the heart of a variety of

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highly valued secondary uses of health data, like research, quality assurance, cost control and the distribution of resources. Standards inevitably simplify a complex interface between health professionals, patients and organizational environment.

Another set of ethical issues has to do with ‘disembedding’ and the affordances and limitations of the ‘physical’ world of face-to-face interaction and material artefacts on the one hand, the ‘digital’ world of distant, disembodied interactions with potentially unknown others and electronically reproducible objects on the other hand. The world of the ‘physical’ is connoted with values such as knowledge of context, transparency, rich communications, and personal trust. The ‘digital’ potentially offers accessibility and sharing (independent of space and time), inclusiveness of the perspectives of distant others, comparability and overview. Objects (such as health records) in this world are ‘active’ – they can be easily manipulated through adding, comparing, visualizing, performing meta-analyses, etc.

The problem here is how to combine both worlds in ways that account for the complexity and ‘situatedness’ of health work preserve context - all that needs to be known to 'trust' an information and to be able to

interpret a case allow to combine the ‘measuring view’ with embodied forms of knowledge guarantee the accountability even of the most distant participants and users protect the self against the diffusion of fragments of personal identities for different and

sometimes unforeseeable purposes

Connecting both worlds requires conscious effort. Being able to make meaningful and competent transitions between them becomes a critical skill.

AcknowledgementsThis paper reflects preparatory work for an Opinion on ‘Ethical Issues of Health Care in the Information Society’ by the European Group on Ethics in Science and New Technologies (EGE 1999). I am greatly indebted to the Group for their discussion of these issues. I am especially grateful to Marc Berg, University of Rotterdam, and to Björg Aase Sorensen, University of Oslo and Norwegian Work Research Institute, for their personal contributions to the debate.

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