The Networking of Health information Handbook for the management of ethical and social questions

Part 2 - Ethical and Social Questions to Anticipate and Assess

Introduction

Objective

The objective of the second part of this handbook is first of all, to address the most compelling and crucial ethical and social issues from among all the issues related to health information networking.

Providing some tools

This part of the manual has a practical vision. As a matter of fact, from Chapter 7 to Chapter 14, eight sets of problems are set out detailing the ethical and social issues. Each chapter includes a list of questions on various levels, that can be applied to every health networking project. These questions are designed for use by all stakeholders and spectators in health information networking. They are likewise working tools to be used for the ethical and social assessment of such projects. They have been drawn up in order to prevent not only the pitfalls that are already known but also the unprecedented problems that are likely to emerge. At the end of every chapter, you will find the bibliographic references used for writing the chapter, then in the Annex, under the title "Suggested Resources", the reader will be able to refer to a list of documents (monographs, articles) and references (Web sites, institutional standards, etc.) that we consider helpful for finding out more on the various sets of problems addressed.

Choosing the sets of problems

The choice of the eight sets of problems dealt with here is based on studies carried out by the handbook team members¹. The results of these studies indicate particularly, that in the eyes of the experts and the stakeholders directly concerned, the most directly political or socio-political considerations (such as modification of the power structure, social control over the health system stakeholders, the issues regarding allocation of resources, etc.) occupy a place that is as important as the questions related to respect of privacy and security. In choosing the sets of problems, we decided to take into account the concerns expressed with regard to information technologies' enormous potential to modify and regulate a number of procedures that are currently used in the health system.

¹ See the General Introduction for the list of these researchers.

Ethical assessment: a necessity

We saw in the previous chapter (see Chapter 5, Networking as the object of ethical assessment) why it is so important, particularly due to its technological, social and political complexity, to grasp health information networking through socio-ethical analysis. We put this analysis into practice in the second part of the handbook. Moreover, ethical assessment cannot just be confined to "specialists": certain networking projects have so many consequences and ramifications that they have much in common with actual "social projects" requiring broader in-depth discussion.

An assessment based on values and principles

Ethical assessment goes significantly beyond the framework of a technology assessment. This is critical reflection that is based on values, principles and rights that are commonly recognized and accepted in our democratic societies. In this spirit, various studies, including ours, and certain public discussions that have taken place in recent years, flag these points: the importance of collective control over technological changes; the necessity to upgrade participation and reflection in the decision-making process; maintaining the integrity of the public health system; the quality of health services and care; the controlled production, manipulation and circulation of health information; finally, the ongoing assessment of automation in health. The sets of problems contained in this part are accordingly dealt with on the basis of these values.

Chapter 6

Chapter 6 (Table of the main socio-ethical questions) suggests an inventory by category of the main ethical and social questions raised by health information networking. The inventory is made up of 28 considerations that are broadly defined and clustered into four categories, that are simultaneously separate and indissociable: considerations of guidance, of society, of networking operationalization and questions of change management.

The eight chapters that follow involve matters that, among the 29, we consider high on the agenda to be dealt with from both an ethical and social perspective.

Chapter 7

Chapter 7 (Equity in the allocation and management of precious resources) particularly asks the question whether the benefits of health networking projects justify the significant amounts of resources devoted to them, a question that is all the more essential because the available resources in health are few. We will examine here the reasons why managers in the health system invest in this type of project and the questions that these investments raise, particularly in a context in which a number of these projects end in failure.

Chapter 8

Chapter 8 (The role of industry and business strategies) describes the place of the development of local industry and employment issues, which is often a deciding factor, as well as business considerations in decisions regarding the development or purchase of health networking applications. We will explain by way of examples, the different industrial and business logics present and how they can enter into conflict with the mission and logics specific to the health system and its institutions. No ethical assessment of a networking project can neglect to take these factors into consideration.

Chapter 9

Thus, Chapter 9 (Participation in the decision-making process) addresses the theme of participation by the stakeholders in the development and implementation of health information networking projects. The broadest possible participation is set out as both an ethical and operational requirement for the success of this type of project. From this perspective and using concrete examples, we will illustrate the basic pitfalls to be avoided at the time a networking project is begun.

Chapter 10

Chapter 10 (The changes in relationships) explains that networking allows not only the circulation of information but also causes significant changes in the proximal relationships between the stakeholders involved in the production and management of information in the context of networking. The ethical assessment of networking projects must explore these changes. Here the review involves the transformations in (a) the inter-organizational relationships, that is, the inter-institutional relationships or the relationships between institutions and agencies, private or public, (b) inter-professional relationships, and (c) the patient's relationships with professionals, institutions and agencies.

Chapter 11

Chapter 11 (Human and social vulnerabilities) proposes looking beyond the question of the security of the tools and information to focus the attention of ethical and social assessment on the security of human beings and the relationships they have with each other. Four themes are addressed: protection of the environment and human health; the risks resulting from malfunctions in network operation; the vulnerability of particular populations and organizations; the risks arising from the very management of security.

Chapter 12

The objective of Chapter 12 (Pressures on consent and accessibility) is a review of the three related and indissociable facets of the protection of patients' privacy in the context of information management in the context of networking. The analysis developed here describes the diverse forms these pressures can take between two fundamental ethical poles, namely the principle of beneficence (or absence of maleficence) and the principle of respect for individual autonomy in the dynamics between protection of information, free and informed consent and access to information.

Chapter 13

Chapter 13 (Management of the secondary uses of health information) outlines the unprecedented possibilities presented by computerization and networking regarding the use of health information. It is becoming increasingly easy to transmit or to transform this information so that it can be used for one or more purposes that are very different from those for which it was initially collected or produced. This phenomenon of secondary use of health information, which is becoming more frequent with the multiplication of networked data bases, generates significant ethical dilemmas, not only for the individual whose information is used but also for society as a whole.

Chapter 14

Chapter 14 (The political transformation of the health system through technology) demonstrates that the design, implementation and management of a health information network do not just come under the area of technology, as a network of this type is also a political system that places its stamp on the health system. We maintain and illustrate here that the ethical assessment of health information networking projects must analyze the links that are woven between the implementation of automated systems and the short and long term transformation aims of the political aspect of the health system; technical solutions must serve political objectives that are appropriately stated and discussed and must not be used to impose ultimate aims that are unintentional or hidden.

Chapter 6 - Table of the main socio-ethical questions

Overview

This chapter paints a picture of the main socio-ethical questions raised by health information networking. It offers a more direct and systematic introduction than currently exists to this complex universe in which multiple significant issues overlap, are blended with, or opposite to each other.

The socio-ethical considerations cannot be completely and exactly set out with all the expected nuances in this single chapter. The objective, then, is not to make a complete inventory of them but to identify from among all the considerations, those which seem to be the most meaningful due to their degree and recurrence in time or in the variety of the networking process. Eight questions are, on the other hand, discussed more fully in Chapters 7 to 14, which are specially devoted to them. These questions will be identified in this chapter with an asterisk (*).

As the result of an inventory created through research and various experiments in the area (see the detail in the Introduction of the handbook), 29 components have been taken up. They have been divided into four separate categories which refer likewise to the main sets of indissociable considerations of all networking processes, namely:

1. guidance considerations which directly concern the exercise of decision-making power;
2. considerations with a social focus, which are directly linked to human and social sets of problems;
3. networking operationalization considerations, which particularly involve problems of design and configuration of networking applications;
4. change management considerations which address more specifically implementation and monitoring problems.

It must be remembered that these considerations are almost all interrelated in one way or another, and if one of them is more identified with one of the four categories raised, it could also fit into other categories. Finally, the fact that the issues are expressed differently must also be considered, that is, they are manifested according to their own situation and degree based on the type of project or type of policy, as well as the context of the networking process.

1. Guidance Considerations
   • 1. Political guidance
   • 2. Networking process guidance
   • 3. Guidance for the Implementation and operation of networking applications
   • 4. Partnership and stakeholders participation (* Chapter 9)
   • 5. Reconciliation and prioritization of multiple interests and expectations
   • 6. Allocation and management of precious resources (*Chapter 7)
   • 7. Accountability and control of stakeholders
   • 8. Industry and business strategies (*Chapter 8)
   • 9. Political transformation of the health system (*Chapter 14)
   • 10. The connection between politics and technology
   • 11. Time constraints
   • 12. Concrete integration of ethical and social considerations
2. Considerations with a Social Focus
   • 13. Management of a public asset
   • 14. Public health surveillance
   • 15. Stigmatization of individuals and populations
   • 16. Human and social vulnerabilities (* Chapter 11)
   • 17. Secondary uses of health information (*Chapter 13)
   • 18. Use of genetic information data bases
   • 19. Intellectual property
3. Networking Operationalization Considerations
   • 20. Identification of individuals
   • 21. Quality of information
   • 22. Retention of information
   • 23. The confidentiality-access-consent triangle (* Chapter 12)
   • 24. Social suitability of technological development
   • 25. Security and flexibility requirements
4. Change Management Considerations
   • 26. Planning and management of the reorganization arising from networking
   • 27. Change in the relationships (* Chapter 10)
   • 28. Confidence of the public, users and control agencies
   • 29. Training in networking practices and culture

A) Guidance Considerations

1. Political guidance

The networking of health information speaks on several fronts to the different public authorities given the responsibility to define and see to the implementation of policies, regulations and various laws that involve the public health sector and the whole of the population. Moreover, as it is capable of creating profound changes in certain practices, responsibilities, relationships and standards within the health system, and its applications eventually involve everyone, technological networking requires the responsible authorities to be willing and able to determine a vision, directions, a plan and the means to act on the basis of the long-term collective interest, rather than on the basis of a special interest or short-term interest.

However, health information networking involves all types of initiatives that are undertaken at various levels (local, regional, national, indeed, international), by different stakeholders in the public sector as well as in the private sector. Accordingly, they are not all accountable in the same way to government authorities and the population. And they do not all share the same goals and interests in the context of networking (see point 5 on this topic: Reconciliation and prioritization of multiple interests and expectations).

This situation creates constant tension in the dynamics between the stakeholders and the decision-making processes. This makes high level political guidance that is effective and capable of transcending special goals and interests for the collective good even more important. One of the challenges is to ensure this type of guidance while avoiding short-circuiting local and regional developments that are deemed beneficial and desirable for the communities involved.

2. Networking process guidance

Health information networking is a vast process of change called upon to follow paths and dynamics that are at once both complex and unpredictable. The outcome of this socio-technological process is largely undefined by virtue of the dimensions that are not only material and informational but also organizational, legal and especially political, social and human. In this context, guidance of the networking process is a considerable challenge. It involves the management of changes and contingencies that cannot always be foreseen.

Proper guidance of the networking process requires on the part of those in charge of projects, policies or teams, the ability to anticipate, analyse and steer in order to see that the planned activities are correctly brought to fruition but also in order to take care of the many surprises that can occur during the process.

The surprises can be of various types, such as cost over-runs, a delay in the delivery of applications, requirements or constraints coming from the arrival or departure of partners, a hostile reaction on the part of certain individuals or categories of individuals, a lack of interest or commitment on the part of targeted individuals, if not the partners. Therefore, it would appear necessary to do a rapid risk analysis which takes into account not only the factors that are likely to have an impact on the immediate operational success of the networking but that will also allow anticipation, based on an ethical assessment, of the factors likely to intervene in the implementation and operation of the networking applications (see point 3: Guidance for the Implementation and operation of networking applications)

Proper guidance of the networking process also consists in the ability to appropriately manage the development of practices, responsibilities, relationships and standards involved in the health system, in a way that is in agreement with the society's fundamental values. If every project, like every policy, is only a tiny part of the vast process of networking, it is through each of the projects or policies that it is possible to contemplate an influence that is both prudent and effective over the course of the change.

3. Guidance for the Implementation and operation of networking applications

As soon as a networking application is designed and developed, those in charge must ensure its implementation and daily operation. A number of the questions that are asked in the early stages of the process remain crucial but the attention of those in charge tends to turn too quickly towards exclusively technical and practical matters: how the application works, the users' skills, utilization rate, error frequency, etc.

While none of the above aspects is negligible, the issues of guidance when implementing and operating applications are very often even more essential. This is how it is when one is dealing with the new application's abilities to fulfill the users' actual needs, expectations and objectives; the ability of those in charge to react quickly to problems encountered by the users; the ability of those in charge to constantly anticipate the development of the social environment and obstacles of all kinds, including the socio-ethical pitfalls; the ability to monitor and ensure effective control over access, processing of and use of networked health information; and, the ability to get an application to evolve without betraying the initial commitments made to the partners, monitoring agencies and the public in general. Some of these issues are discussed in greater depth elsewhere in this chapter or in the handbook.

4. Partnership and stakeholder participation (* Chapter 9)

The complexity and social focus of the transformations anticipated with the networking of health information requires acuity of judgement and a sense of caution throughout the decision-making process. However, countless decisions are made at different times in networking and involve aspects that are as varied as the objectives, plans, funding, design, users, partnership, etc. As change brings a plurality of questions which assume vast knowledge so they can be answered, change also requires the input of a variety of stakeholders and a variety of expertise, the only way to adequately address all the aspects.

The input of the stakeholders directly affected by the change, including that of health professionals and representatives of populations affected, is also a major asset in promoting the social acceptability and benefits of networking. By bringing together the individuals and groups directly affected, especially those who have a specific knowledge of the realities of the environment, it is possible to contribute not only to making technologies more suitable, but also to a better connection with practical realities, indeed, a development that is more socially beneficial.

However, the participation of affected stakeholders is especially an ethical imperative based on a democratic principle: the right of every individual to know and have his or her say in the decisions that directly involve him or her, especially when they will have to bear the costs and impacts of networking.

In all cases, the challenge for those in charge will be to manage to equip themselves with effective participation mechanisms that will ensure the balance of powers, interests and knowledge and that will allow informed choices to be made that are suitable and applicable with regard to the stakeholders who are affected in various ways.

5. Reconciliation and prioritization of multiple interests and expectations

Multiple institutional and social stakeholders are engaged in the networking process, which poses the difficulty of reconciling assorted interests and expectations, which are at times in direct opposition to one another.

Indeed, nurses, physicians, public health specialists, researchers, technological consultants, software manufacturers, public and private insurers, pharmaceutical industries, funding agencies, administrators, managers and patients all have their own vision of networking and do not expect the same benefits. The differences in point of view are observed not only between such stakeholders as distinct as the nurse and the software manufacturer but also between stakeholders in the same field such as the practice of medicine: general practitioner or specialist, urban or rural. The differences in point of view can involve very different considerations, general and specific alike, particularly the ultimate aims of networking, of applications, development priorities, allocation of resources, the planning of activities, distribution of tasks or responsibilities, accounting, the design of applications, interface configuration and the content of data entry documents.

In broader terms, these are the forms of partnership and funding that can pose problems or at least raise questions. For example, funding agencies have their requirements regarding both budgets and schedules that can quickly lead to painful decisions for those in charge of a project: rushing or speeding up certain work, forcing the implementation of an application that is not completely finished, adjusting the project to satisfy a partnership with private enterprise imposed by the funding agency, etc.

One of the issues related to partnerships deals with possible conflicts of interests, roles or responsibility that can appear at different levels and times in the decision-making process or the action. The ability to reconcile and prioritize multiple interests and expectations is a constant challenge for those in charge of networking projects and policies.

6. Allocation and management of precious resources (* Chapter 7)

The resources extended to health care and more generally to the health system seem increasingly scarce or at least, limited. The allocation of these resources for the development of networking technologies poses significant questions, indeed, critical questions, pertaining to the amount, circumstances and the likelihood of benefit that can come of it. By definition, the benefits of health information networking ought to be in connection with the objectives of public health and good. However, the motivations can be different depending on the authorities and stakeholders involved.

The challenge for the decision-makers is to be able to anticipate and gage the probable benefits as well as to prevent counter-productive effects on health and society brought about by resource allocation decisions. A fair distribution of development, implementation, operating and maintenance costs must also be established by the various stakeholders as well as a fair distribution of the benefits, being careful not to alter the nature of the different organizations' primary mission.

7. Accountability and control of stakeholders

The coordination and accountability of the various stakeholders engaged in guiding the networking process as well as in the implementation of the technical applications makes setting up accountability and control mechanisms necessary. The credibility of the process and the public's confidence in the project take preference and priority. Without these mechanisms, there is a great risk of deviations occurring related, for example, to the lack of commitment, to failure to respect agreements, to breach of contract, to violation of the confidentiality of certain information or the irregular use of protected information. One of the difficulties for those in charge of policies and planning is accordingly to ensure the legal and moral accountability of all the stakeholders involved in the short, medium and long term, including the stakeholders providing guidance.

One of the solutions to this problem is to rely on control or monitoring mechanisms that are as independent as possible from the interested stakeholders when guidance is involved. But specific mechanisms are required based on the nature of the actions to be monitored. These particularly have to do with directions and ultimate goals that are determined at the outset, partnership agreements, manipulation of information, access to tools and information, and use of this information.

The challenge is to succeed in bringing about enough of a consensus among those in charge not only on the importance of accountability and control mechanisms but also on the form that they must take and the effective power that must be granted to them.

8. Industry and business strategies (* Chapter 8)

The decisions regarding resource allocation in networking are based on different considerations that are not necessarily all related to the primary mission pertaining to the health of populations. Government decisions, for example, also serve other government missions, particularly regarding the economy and employment. The development of the information technologies and communications sector is at the core of all industrial policies, which can create conflicts when the time comes to choose a technology, an application or a supplier for the health sector. A certain technology may be favoured in order to encourage a local supplier even if it is not an ideal answer to the community's needs.

Public health institutions occasionally develop new technological products themselves and try to maximize the returns on these investments through marketing strategies. One of the challenges is to succeed in maximizing the returns on these investments without compromising the institutions' primary mission.

Moreover, the industrial sector must also make strategic choices in order to ensure its own growth and be able to potentially expand towards the important U.S. market. These strategic choices govern numerous decisions, which can among other things lead to the design of networking applications to meet, first of all, regulatory requirements in the United States, for example, for consent or protection of personal information.

The pitfall then, is to unduly subject networking decisions to industry pressures and strategies. In the face of all industry pressures and strategies, all those in charge of projects or policies must be brought back to this unavoidable criterion by which the success of health information networking is judged: its suitability for the community's needs and realities.

9. Political transformation of the health system (* Chapter 14)

Information networking allows meaningful changes to be supported, driven and managed in the health system. Implementation of high-performance information technologies is often presented as a condition for implementing new generation policies, like program-based or results-based management.

However, a fixation on the technical dimension often leads stakeholders to neglect discussions on the impact of the development of these technologies on the very structure of the health system, the organization of powers and their approaches to governance.

Networking cannot be designed without taking into account the evolution of the health system or considering the impact of this technological development on the development of public policies. On the other hand, the link between these policies and the implementation of networking applications is not always well studied or understood. Issues like those raised by the creation of integrated networks of health care and health services, such as the implementation of standardized care protocols, the rationing of care, and public-private partnerships often remain in the shadow.

By placing technical discussions in the foreground, as is generally the case, it is easy to lose sight of a fundamental principle of democracy: every political transformation of the health system, like the process of creating networks, requires going through the agreed upon democratic mechanisms. The first mechanisms to consider are discussion and participation but also, in the present context, socio-ethical assessment enabling the project's or policy's objectives and ultimate goals to be studied.

10. The connection between politics and technology

The design, implementation and management of networking applications in the health system do not come under a strictly technical undertaking. Behind every information system a political system is revealed, that is, an organization of power among individuals. An information system in part determines the respective distribution of rights, duties, powers, resources, etc. to the various individuals and imposes, through this, its imprint on the health system itself.

One of the pitfalls, then is to leave the task of defining the information system up to the technical experts. The temptation is, in fact, very great to entrust networking application solutions to technical staff or consultants on the simple basis of a broad and fuzzy description of the needs and objectives. This recipe is the equivalent of giving them the power to determine networking application policy.

Inversely, the insidious use of a technical process to promote the realization of a political project, the acceptance of which by public opinion is otherwise difficult, poses a problem that is just as serious on the socio-ethical level.

While considering this problem, it is of fundamental importance to ensure that the technical solutions serve legitimate political objectives and not the reverse. The challenge is to integrate the political with the technical, to give back to the political decision-makers their just place in the political transformation of the health system - a transformation that involves all of society and intervenes in the relationships of power within the health system (This theme is also developed in Chapter 14: The political transformation of the health system).

11. Time constraints

Every change takes place in time. In the context of a networking project or policy, time quickly becomes a constraint. This constraint is generally dictated by other sources of constraint, often budgetary but also occasionally, strategic and political. Beyond planning difficulties related to the different activities that are necessary for completing the project, the risk is to get there by greatly reducing the requirements - technical and socio-ethical alike - in order to meet a timetable that is unrealistic from the outset or that has become so as the project progresses.

The challenge consists in finding the balance between the constraints of the timetable and the requirements for a product meeting criteria of technical, social and ethical quality. One of these criteria remains the suitability of the networking applications to the actual needs and concrete realities of stakeholders and their intended uses (see point 24 on this topic: Social suitability of technological development). Unsuitable management of the time constraints can lead to bypassing the correct identification of needs and realities as well as the participation of the involved stakeholders in the design and development of the application.

12. Concrete integration of ethical and social considerations

If the anticipation and identification of the socio-ethical issues is a crucial phase in every networking process, it is because it must lead to their actual recognition when policies or projects are defined, or when designing the applications and ensuring their implementation and proper operation. The concrete integration of these considerations is a challenge at all times, because they do not fit in automatically, nor naturally, in the practical and strategic considerations of the experts in charge of a large number of structuring decisions pertaining to networking.

The challenge consists more specifically in integrating these considerations together with considerations of technical and scientific soundness, effectiveness, costs and benefits - from the moment the work begins. In this sense, the considerations must take into account the contributions of assessment committees, ethics committees and monitoring committees that are well placed to anticipate and identify the most important issues. One of the pitfalls would be to only settle questions of protection of personal information, consent and security when the issues are so much greater and complex, as shown in this handbook.

B) Questions with a Social Focus

13. Management of a public asset

Health information networking comes under a collective project before being led to collective goals. On the one hand, its realization and management involve recourse to so-called public resources belonging to the government or its institutions. On the other, networking assumes the implementation of databases made up of information on populations and individuals generated by a great diversity of stakeholders, much of this information coming from the public sector which by definition is accountable to the government or its institutions. Finally, access to this information will result in multiple uses, benefiting the public sector as much as the private and will involve various health system activities, respectively the clinical and administrative areas, as well as public health, research and self-care. This information and the knowledge it enables to be produced will profoundly structure public debates on all questions pertaining to the health of populations and of the health system.

In this way, then, the management of networking and health information cannot be looked at like the management of a business falling within the private sector, even if a large portion of the information processed is of a personal nature or is kept by private organizations. Rather, this matter must be considered like the management of a public asset which assumes a set of parameters based on democratic principles such as transparency, participation, accessibility and the sharing of benefits.

A set of actions or predispositions accordingly follow from these principles such as acknowledging the rights of individuals and communities, adequate information, training in informatics culture, training in citizenship and democracy in an information society, and the implementation of fair conditions for access to information and how it is handled.

14. Public health surveillance

The public health sector is likely to draw numerous advantages from health information networking. Thus, networking will allow the effective implementation of systems and procedures to better monitor the state of the population's health, to detect emerging health problems, to organize a targeted prevention or solution intervention, or to assess and ensure the monitoring of general policies pertaining to public health. Furthermore, networking could allow research to be conducted the scale, scope and precision of which would be impossible to achieve without access to a significant volume of information and its comparison based on different databanks, occasionally coming under areas other than health or other countries or territories. Networking should also allow surveillance and prevention of infectious diseases (like the human variant of Creutzfeldt-Jakob Disease), pandemics (like influenza), even bioterrorism, and do so much more effectively thanks to the interconnection on an international scale of different systems operating in more or less real time.

However, these possibilities imply numerous adjustments or changes first, like the harmonisation of legislation between the different territories or the implementation of a guidance structure that ensures clear authority, a procedure for accounting to the public and clarification of the roles and responsibilities between the multiple stakeholders involved, who are both government and non-government communities.

At the same time, numerous risks appear or are quite simply intensified by technological developments. The requirements of inter-network standardization could allow a limited number of stakeholders (particularly the dominant countries) to impose standards or practices that are unsuitable for situations and national or regional priorities pertaining to public health. Another risk would be creating confusion among public health and other objectives like the fight against terrorism or economic competition. Already, public health and homeland security authorities in the States are putting in place new information exchange systems to improve their respective abilities to respond. Finally, there is also the possibility that population sub-groups, that will now be easier to identify and monitor through tracking the information they leave, will be subjected to stigmatization, discrimination or increased marginalization or, disproportionately quarantined (see point 15 on this topic: Stigmatization of individuals and populations). In certain cases, an entire territory could be the subject of a world alert in the face of an epidemic outbreak as was the case for Toronto with the recent SARS episode. In situations such as these, the possibility of unfair treatment or even the appearance alone of unfair treatment, could encourage certain governments to withhold crucial information that could have an unfavourable impact on them.

Taking into account the potentials for disorganization and political, economic and social pressure following from the production, circulation and use of information that can result in setting off alerts and interventions, public health networks must be meticulously assessed in a socio-ethical context.

15. Stigmatization of individuals and populations

Health information networking greatly increases the possibilities of surveillance: organizations, populations and individuals can all be subject to it. While not new, it is now likely to grow in significance and effectiveness, particularly due to technical possibilities and the increasing willingness on the part of authorities to use it as means of controlling resources and behaviours.

Despite the positive spin-offs that can ensue, for example regarding accountability or public health, certain risks exist. One of them is related to the possible forms of excessive monitoring, stigmatization, discrimination and exclusion of categories of individuals and populations. These practices that go against the rights, values and principles of a free and democratic society can result from applications that are clinical, administrative and related to public health alike, or even research. Indeed, networking can allow the categories of individuals and populations likely to present a risk to be identified more fairly, whether with regard to individual or public health, insurability or levels of service consumption. Conversely, the fact that situations are less easily detectable or are in a blind spot in information systems could penalize certain groups deserving attention or particular treatments.

In short, the increase in the abilities to produce and process information can strengthen certain relationships of power or create new conflicts. The first challenge is accordingly to develop critical knowledge of the power of information and how this power is exercised, particularly in the control and forms of social regulation it enables to be implemented.

16. Human and social vulnerabilities (* Chapter 111)

The manipulation of personal information automatically poses the questions of the security of information, automated systems and telecommunications networks. The concept of security is that which receives the most attention. However, from a socio-ethical point of view, it is human beings and their relationships with each other and institutions that should be protected. Indeed, the human and social dimension appears beyond the strictly technical aspect of security. The issue being less the protection of systems in the face of risks of an environmental or human nature than the protection of human beings and their environment in the face of the systems on which they are increasingly dependant.

In the face of this increased dependence, the least malfunction, the least inability to meet a need or the smallest error is likely to translate into problems which will be felt directly by the patient who is receiving care, by the institutions and their staff who must perform their duties and fulfill requests, by researchers who need information, etc.

The challenge is to review vulnerability, and not from the technical aspect but from the social aspect: the vulnerability of human beings and their relationships with each other and with institutions.

17. Secondary uses of health information (* Chapter 13)

The purpose of health information networking is to increase the opportunities for secondary use of the information, that is, taking the information that is collected or produced for one purpose and using it for another completely different purpose.

In the case of personal information, this use is far from being self-evident as it puts at risk fundamental principles like the confidentiality of personal information, the relationship of trust between the patient, the professional and the institution, and the respect of human rights and freedoms.

Personal information can be used to produce statistical data, information or indicators about phenomena or populations. It can thus be used to produce knowledge, debate questions or make decisions that, in the end, can have an impact on the very individuals the information involved in the first place. A classic example is the transformation of personal information into actuarial data creating risk profiles on the basis of which an insurer accepts or rejects coverage for health services.

There are also legal boundaries for secondary use of health information in as much as it is personal. However, technological advancements in progress are so considerable that they upset and call these boundaries into question. Ethical discussions concerning the use of health information in its non-identifying or impersonal form are in their earliest stages.

18. Use of genetic information databases

One of the directions in which networking is developing is in the creation, management and operation of databases that contain human specimens or personal information of a genetic or biological nature (DNA, cells or tissue), namely, genetic information databanks. It can be predicted that sooner or later, these databases will be networked with other databases of health information, medical records or other health records, for example. Research infrastructures in place in different environments rightly aim to facilitate the use of different sources of information stored for multiple research purposes, certain of which not yet being determined.

However, a number of genetic information databases currently in place partially escape the obligation of accountability and control to which other databanks of health information are subject, like universities and hospitals. This situation must be considered by every stakeholder having a role in the networking of information, as it can have repercussions that go beyond the community the genetic information databases involve per se. Significant ethical questions are being asked regarding, among other things, the legitimacy of the databases in existence and their regulation.

The challenge of those in charge of networking is to consider the specific nature and various, particular implications of the use of information drawn from genetic information databases in the context of health information networking.

19. Intellectual property

Health information networking and the creation of databases and data warehouses will involve an increasingly large number of stakeholders, all the while exponentially increasing the role played by some of them to date. This will also allow new forms of data to be created by virtue of access, processing and overlapping of information offered by networking, which moreover multiplies the potential secondary users of the information.

These new information forms and new computerized data processing are used to produce or process information that may be protected under the heading of intellectual property, whether it has to do with copyright, trade secrets, patents or more. These legal mechanisms are accordingly likely to give rise to a certain form of appropriation of information and applications that were first produced in public plans and that can be used to the exclusive benefit of special interests.

Networking connected to the outsourcing of services to the private sector or to the implementation of public-private partnerships, places even more emphasis on the risk of seeing intellectual property being translated into a greater impossibility for public health agencies, the government and civil society to have access to health data with a view to promoting objectives of public interest. Health information networking can then involve the balance between business or industry objectives and public health objectives and the healthy management of the public health scheme (this subject is addressed in Chapter 8: The role of industrial and business strategies).

C) Networking Operationalization Considerations

20. Identification of individuals

Connecting information scattered in various records on a single individual requires the use of personal identifiers. The available options are quite numerous, (from personal identification number to retinal scan), as are their respective ethical implications.

Thus, recourse to the health insurance number as a universal patient number would be efficient and inexpensive but would offer a very low level of security for individuals as it is widely disseminated elsewhere besides in the health sector. Vice-versa, the use of specific identifiers for every record or the absence of all identifiers could offer greater security, indeed, total control over access if, for example, the patient and a trusted third party are the only ones to have the key to all the identifiers. However, this proves to be costly and complex to manage, especially for access without consent for administrative or research purposes.

The choices in this area can be of a long term structuring nature, particularly with regard to the functioning of networks, applicable legal protection plans, human and social vulnerabilities and the exercise of individuals' basic rights and freedoms.

21. Quality of information

The success of health information networking is largely dependent on the quality of the information found there. It cannot be assumed, however, that the information contained in the databases is exact, complete and relevant. Taking into account the vast number of sources, the contexts and ultimate purposes of the collection or production of information, the lack of uniform rules for inputting data and the amount of processing it has subsequently undergone, networked health information can easily be shown to be incomplete, inexact or irrelevant.

Furthermore, errors can be caused during inputting, transmission or manipulation of information. Problems of integrity of data arising from risks of theft and sabotage or failure of information and equipment, must also be managed. The problems can be especially serious when they have to do with personal information required for decisions of a medical or therapeutic nature.

In these situation, but also in numerous others, problems related to quality are such that they require the introduction of, or at least the improvement of, the mechanisms for controlling information and those who have access to it. The main challenge is to ensure that health information that is made available by current and future databanks is exact and complete, as much for secondary uses and beyond as for primary uses.

22. Retention of Information

Networking databases of information on the scale of the health system involves profound transformations in designing the way the collected information is stored or archived. Various versions or derivatives of the same information could now be successively or simultaneously kept and controlled by a number of separate professionals, institutions and agencies. This change poses a challenge especially for determining whether this information should be updated or not, if it should be completely or partially updated, who should be responsible for doing it, how to do it and under what conditions.

The possibilities for retaining indefinite quantities of information over an indefinite period of time, that can extend over a number of generations, demands a critical awareness not only of the power this information has, but also of the mechanisms, procedures or protocols in place to ensure control over the medium-, long- and very long-term.

Moreover, objective difficulties can occur in the maintenance of digitized records over long periods due to the rapid development (or obsolescence) of information management software, the diversity of information status (active, semi-active or archive) or again, of the segregation of information that is out of date. There are many problems anticipated that require careful assessment of information retention.

23. The confidentiality-access-consent triangle (* Chapter 12)

Networking of personal health information shifts the locus of surveillance and control and increases the problems locating and correcting errors. It makes information separation and retention operations more complex, changes the focus of consent for the communication and use of this information and, especially, distances the patient from control of information about him or her.

The challenge consists, on the one hand, in appropriately considering the questions of protection of personal information and consent and on the other, fostering the accessibility of information that is as reliable and useful as possible. This prerequisite particularly asks how is truly informed consent produced even in a context of uncertainty and complexity.

In any case, it is necessary to explore the different avenues likely to protect or preserve basic patient rights or subsume practices without involving the essentials of these rights.

24. Social suitability of technological development

From the moment in which it is put into operation, every networking application is faced with the particular multiform and complex realities of the public health sector. For its successful integration with the social realities that are known to be multiple, delicate and changing, a networking application must be able to respond to a diversity of situations and needs, which are those of the stakeholders it is intended for.

A problem of suitability of the technical tool to the realities of the environment can hypothetically produce a series of consequences, for example: errors or failures in creating records, failed processing of information, an inappropriate decision or outcome, an incorrect or incomplete follow-up, dissatisfaction or disinterest on the part of the users, and a waste of resources. In other words, a large portion of the success of health information networking can be challenged.

The challenge that appears from the outset of a project is to ensure the social suitability of the networking application, which implies having to think nearly simultaneously about the technical challenges to the physical, psychological, cultural and social realties of the environment.

25. Security and flexibility requirements

One of the difficult balances to strike is between the requirements for networking to be flexible and the need for security, aiming to ensure, among other things, the integrity of the data and preserve its confidentiality. In the context of health information networking, it is necessary to upgrade the availability of information along with its integrity, accountability and confidentiality.

The challenge is to meet security requirements without going overboard with rigidity and locking up the tools, which would be contrary to needs and to the possibilities of networking applications' adaptability and flexibility. The challenge is also to contemplate appropriate levels of security depending on the sensitivity and degree of confidentiality of the health information without falling into a police-like surveillance mentality.

D. Change Management Considerations

26. Planning and management of the reorganization arising from networking

There are numerous impacts to be anticipated about the networking of health information, whether regarding practices, responsibilities, relationships or standards. Proper guidance of the change process, as we said earlier, requires the ability to appropriately plan and manage this reorganization.

The challenge is to anticipate networking's effects on the existing structure of tasks, decisions, coordination, control and surveillance. The issues connected to the organization of work and the practice of professions also need to be integrated into this guidance (review points 2 and 3 to further extend this).

27. Change in the relationships (* Chapter 10)

A set of laws, rules, understandings and professional obligations set out the individual and organizational responsibilities that govern the relationships among the different stakeholders in the system, including the patients. However, numerous relationships will be transformed or affected by information networking: inter-organizational relationships, inter-professional relationships and the relationships of the patient with professionals, institutions and agencies.

Furthermore, networking puts professional practices on display, and exposes the resulting professional decisions and actions to the scrutiny of guidance procedures, peers and the general population. Therefore, the professional loses a part of the privilege over information generated during consultation with a patient by recording this data for the benefit of a greater number of stakeholders. While bringing many advantages, these changes are also likely to involve evolution towards agreed upon professional practices that are very different from those that are known today.

The challenge is to anticipate the transformations to the relationships between stakeholders and institutions brought about or accompanied by health information networking. The challenge is also to consider the full extent of the related cultural and organizational changes.

28. Confidence of the public, users and control agencies

Confidence of the public, the users and control agencies is essential for the success of every networking project or policy. It contributes to providing those in charge with leeway to go forward but it is never acquired in advance. In numerous occasions, we can observe the fragility of the confidence linking the public in general and the authorities in particular.

The confidence the public shows in the context of networking is based among other things, on the quality of the information received on the objectives and implications of the different projects or policies, as well as on the assurance of seeing the establishment of an actual democratization of access possibilities and legitimate uses of resources in information, suitable control and surveillance mechanisms of the latter, including credible individual consent mechanisms and collective participation in decisions. For the users, confidence can be acquired through suitable information, appropriate applications from the point of view of needs and use objectives, a real opportunity to have an influence on their development, and through real coaching over the course of the change. For the different authorities in charge, in particular control agencies, the establishment of a rapport of confidence goes through the assurance that the appropriate mechanisms for accountability, participation in decision-making, security and protection of personal information, consent as well as monitoring of the uses of the information and networking applications will be put in place.

In all cases, the challenge is to establish a climate of trust as much with regard to a project or specific policy as to the phenomenon of health information networking in general. The challenge is also to consider both perceptions and actions in different discussions and decisions.

29. Training in networking practices and culture

Health information networking both creates and requires a particular culture for its different users and for the other stakeholders concerned. This culture is rooted in new structures of coordination and communication between the interested parties, in the new ways of thinking and working, and of course, in a new relationship with information and how it is processed.

This culture has less need for familiarization with the functioning of particular applications than for an understanding of the growing role of information and communications in the organization of real life. Every networking project or policy should accordingly give great attention to training and the development of this culture. Computer and networking training, which is intimately connected to the process of approval of the tools used, particularly their social and ethical dimensions, constitutes a factor of success.

One of the challenges is to ensure that all the stakeholders involved with the networking project - especially the designers, operators and users - share at least a common base of knowledge, language and culture to be able to really discuss together.

Conclusion

The purpose of this chapter was to offer an overview of the socio-ethical considerations we felt are the most important by virtue of the number and frequency in time or in the variety of procedures. It is necessarily incomplete and the questions it raises are only alluded to. The purpose of the following chapters is in fact to probe the questions we consider to be especially high on the agenda.

Chapter 7 - Equity in the Allocation and Management of Precious Resources

Overview

This chapter addresses four questions regarding the allocation of precious resources to develop projects for the use of information technologies in the health system.

1. Why do managers of health systems make substantial investments of precious resources to develop projects focused on the use of information technologies in the health sector?
2. What main concerns are likely to arise, and should be anticipated, when allocating precious resources to information technology projects in the health sector?
3. If failure of health information networking projects results in waste of precious resources, why do these projects fail?
4. How can waste of precious resources be kept to a minimum and how can these resources be distributed in the most equitable manner?

In partial answer to these questions, this chapter provides a set of reflections on precious resources devoted to any project for the introduction of information technologies in the health system.

The distribution and management of precious resources, particularly those earmarked for the sick, suffering or dying, challenges and even opposes the fundamental values by which societies, professionals and individuals define themselves. The issues addressed in this chapter are some of the crucial ethical questions raised by investments of precious resources and information technologies in health care.

In Search of the Right Balance

Scarce or, at the very least, limited resources

A society must always find the right balance between the allocation of resources to health care and to other assets, services and needs that are just as important for order, stability, and the development and prosperity of this society. Resources allocated to health care will always be scarce or, at the very least, limited.

For a few years now, governments, ministries of health, as well as health managers have devoted precious resources to develop projects based mainly on the introduction and use of information and communications technologies.

From an ethical point of view, it is crucial that we question the allocation of these resources and specifically examine if the amounts allocated are in proportion to the extent and the probability of the benefits to be reaped by the patients and the health system as extolled by the proponents of these projects.

The Underlying Reasons for Investment of Limited Resources in Health Care Information Technology

In various countries, particularly rich and developed countries, the governments, ministries of health and administrators of health care institutions allocate significant amounts of precious resources - such as time, money and professional services - to develop and implement a large number of projects for networking health systems and institutions.

Major investments

Since 1997, the federal government of Canada has provided approximately $1.5 billion to 15 programs or funding projects in order to subsidize 153 health-related information technology projects. These projects fall into seven categories (see box on next page) ranging from developing electronic files to implementing telehealth projects.

Among health information technology projects initiated, a certain number have as their objective the implementation of networks among health institutions, laboratories and data banks such as health insurance, pharmaceutical data bases and clinical data storage centres.

Availability creates demand

We would be deceiving ourselves to believe that society could meet all financial needs and all requests made of a health system when health technologies, knowledge and services available are continually evolving. It is important to note that any new health product or technology will find a buyer as availability creates demand. Health services needs are constantly reassessed and expanded on the basis of the resources available, the new technologies, new treatments and services [Office of Health Economics; M.I. Roemer, 1961].

Why are significant amounts of these precious resources allocated to developing and implementing networking projects? How do we explain the fact that these investments are made even when the health systems and their institutions are struggling with drastic budget cuts; when there is a shortage of modern diagnostic and therapeutic equipment; when there is an insufficient number of intensive care and long-term care beds; when access to leading-edge care in regions remains inequitable; and when there is a shortage of qualified staff in various specialties?

The answer to these questions is complex and is based on the vision and objectives underlying investments of precious resources in health information and communications technologies projects.

The promise of solutions for many shortcomings

It has been said that information and communications technologies make it possible to develop many projects, which, individually and in conjunction with others, could eliminate shortcomings in delivery and quality of care, access to health care and reduce the cost of health care.

Providing an adequate description of the multiple objectives covered by this vision and the interconnection between these objectives falls outside the scope and purpose of this chapter. Nevertheless, it is definitely expected that the computerization of patient records and their networking will provide all the information required wherever the patient receives care and sufficient details to diagnose and treat the health condition [Tierney, 2001; Espinosa, 1998].

Should this situation ever materialize, it promises to greatly reduce the time and money spent on retrieving important information dispersed throughout a number of records, in various locations where the patient previously received care. In addition, it has been estimated that doctors spend one-third of their time recording, retrieving or integrating clinical information and that the cost of managing this data represents one-third of a hospital's budget [Weiner et al., 2003].

The underlying reasons for the considerable investments made are summarized in a document prepared by the Institute of Medicine (U.S.A.) stating that new investments in information systems are the best means of improving the safety, quality and effectiveness of care in a health system. While recognizing that improving safety, quality of care and health research as well as the effectiveness of prevention are all worthwhile objectives, we must also consider the possibility, especially in the context of a discussion of precious resources, that the motivation for implementing and using networking and health information technologies is that these innovations foster the economic survival of both public and private institutions [Simpson, 1996]. Industry pressure and the belief in the power of technology also influence the decision to make investments in information networking projects.

Precious resources Applied to Health Information Technologies: Questions Raised

The researchers who participated in a Delphi survey conducted by the Center for Bioethics of the Clinical Research Institute of Montreal in 2000 and 2001, identified 9 categories of ethical and social problems pertaining to projects on information and communications technologies in the health system. The main theme of the survey was Health Information Networking Projects [Péladeau et al., unpublished].

Failure of Health Information Technology Projects Wasting Precious resources

A number of health information technology projects - including applications pertaining to electronic patient records, the health information system or expert systems and health information networks - have failed in the past fifteen years. There is a wide gap between the hopes elicited by information technologies and their ability to improve the quality of clinical care, research and management of institutions or the system in general.

Four types of failure

In recent years innovations in health care information technologies have had four types of failures.

• Innovations in information technologies
• Four types of failure
• Total failure
• Partial failure
• Sustainability failure
• Replication failure

The total failure of an informatics project occurs when, after having invested considerable amounts in the development of an application, it is never put into practice or it is abandoned after the launch. The partial failure of an information technology initiative occurs when it does not meet a sufficient number of the objectives for which it was designed or when the results of its introduction are too expensive for the institution and disrupt its operation. Some innovations, although they meet with success in their implementation, are eventually put aside or are inadequately used. This is a sustainability failure can be attributable to a lack of continuity in funding or incompatibility between the technological innovation and the culture of the host institution. Some of these innovative projects pass the pilot project stage successfully but do not pass the test of implementation in a health institution. This is deemed a replication failure since the results of the pilot project cannot be replicated on the scale of normal operations. [Hecks, Mundy and Salazar, 1999].

The observation that "several health institutions have spent astronomical amounts of money and frustrated an incredible number of people in the unsuccessful effort to implement information technology systems" [Paré and Elam, 1998] warrants reflection in an effort to determine the reasons for these failures which are rarely due to a single factor.

A Case Study

The purpose of the Limpopo project was to implement a computerized and integrated system for health data at hospitals in the Limpopo province, South Africa. This project, one of the largest health informatics projects in all of Africa, clearly demonstrates the various factors that can result in the failure of a project [Littlejohns, Wyatt, Garvican, 2003].

The objective of this health sector computerization project was to design an electronic network of 42 health institutions in the Limpopo province and the central server of the Information Technologies Operations Centre of the Health and Welfare Ministry. The Centre was to store on its server a central patient record and clinical data from 42 hospitals in an effort to improve hospital management and the requirements of epidemiology research. This integrated health information system was designed to improve delivery of care to the sick, and improve performance and efficiency of hospital management.

The causes of failure observed

The Limpopo project was a failure from the time the computerized system was implemented. From the beginning, the process was affected by the lack of appropriate premises for the computer service and by power failures, as well as technical design flaws in the computer system which included too many functions, and by a lack of organization during the implementation process such that delays caused serious dissatisfaction among staff.

After the system was installed in 24 hospitals, it was noted that it was not producing the anticipated results and modifications were made. These modifications did not significantly improve system results and the system had to be abandoned. The Limpopo integrated computer health system is one example of a total failure that wasted precious resources totalling approximately US$22 million, or 2.5% of the health and welfare budget of the Limpopo province.

An evaluation report on the Limpopo project concluded that this example clearly illustrates the various reasons for failure that were also experienced in other countries and identifies a certain number of factors that led to the failure of the Limpopo project.

Although a detailed discussion of the causes of failure is beyond the scope of this chapter, we will revisit factors at the root of these failures in the section on precious resources and questions that should be asked before implementing information technologies in health institutions.

The Gap Between Design and Reality: A General Cause of Failure

The collapse of the Limpopo project is a good example of the most general and encompassing cause of failure when implementing a networking project: the gap or incompatibility between the design of the system and the social and institutional reality of the implementing body.

These gaps occur along one or more of the following seven dimensions on which the failure or success of the networking projects rest.

The design of a project well-founded in reality: A success story

The home-based health information network Computer Links was designed to allow patients, individually or as a group, to communicate with one another and to provide them with access to an electronic encyclopaedia on HIV and AIDS [Brennan and Ripich, 1994].

It was a resounding success and is a good example of the perfect harmonization (according to the 7 dimensions) between the concept of this innovation and the reality for which the network was designed.

The flexibility of access to the various sources of information in this network enabled the AIDS patients to satisfy their true need for information (Information).The computer technology adopted was simple and did not exceed the abilities and the means of the users (Technology). Information was obtained from the network with methods similar to those previously used by the patients (Processes). The network helped AIDS sufferers to attain the objectives that were important to them: to interact with other individuals in the same position and to obtain the information they were seeking on their illness (Objectives and Values). Management of the network only required one nurse on a half-time basis and demanded very little new knowledge. The network design was suitable for the part-time staff having limited computer skills (Human resources and skills, Management and structure). In addition, this network was accessible 24 hours per day to AIDS patients receiving at-home care. Finally, the equipment only cost US$350 per patient. The design of this network matched the needs of the AIDS patients and was in line with the limited financial resources available (Other resources). [Heeks, Mundy, Salazar, 1999].

Design in conflict with reality: an example of failure

In the United Kingdom, a pilot project for the introduction of an expert system for computerized coloscopy failed and had to be abandoned because of the incompatibility between the design of the system and the actual working environment at the hospital where it was introduced. There proved to be incompatibility in all seven dimensions listed previously.

First, the expert system was designed to provide statistics about coloscopy. However, there had not been a request from the Coloscopy Unit for such data (Information). Second, the expert system was technically very sophisticated and required an energy infrastructure that exceeded the technical capabilities of the hospital (Technology). Third, automation of the decision-making process by the expert system conflicted with the value system of the doctors and their more human approach to decision-making (Processes, Objectives and Values). Fourth, the expert system was technically difficult to use. It required computer expertise that the hospital did not have and considerable amounts of time. Moreover, it was expensive to operate (Human resources and skills, Other resources) [Hecks, Mundy, Salazar, 1999].

It is true that certain networking projects fulfill their promises and make changes that improve the provision of services to the sick, the way of conducting health research and managing hospitals and health systems. However, no information technology can implement itself. Very complex working environments must be prepared for the changes resulting from the networking. The design and implementation of projects must connect with the culture of the implementing organization. Any project that does not adapt the technology to the institution and the social realities is destined to fail from the outset and will only result in the waste of scarce health resources.

Questions For Evaluating the Promises of Networking

Some ethical markers

The amount of scarce health resources allocated to develop and implement various networking applications should be proportional to the benefits and improvements anticipated and the probability that these improvements will materialize and will be sustained. Second, from an ethical point of view, it is crucial that precious resources be allocated and managed with the objective of promoting health care for the good of all individuals in the society. The allocation of resources must also seek to maintain equity between the various regions of a province and country and between the various professional health institutions in these regions. It is unfair, from an ethical standpoint, for the distribution of scarce health resources to information technologies to be carried out in such a way that certain individuals, professions or institutions reap the most money, information and power to the detriment of others.

Questions leading to answers can be crucial to the success or failure of a project

Any networking project must be scrutinized and assessed from an ethical as well as technical standpoint. This chapter discusses the meticulous ethical review of a fair distribution of precious resources to networking and their responsible management. This ethical review requires that we ask the following questions cognizant of the fact that the answers may foster or place the projects at risk.

Conclusion

The allocation and management of precious resources, especially resources intended for the care of the sick, dying and those in pain, can challenge our fundamental values and even place them in conflict. These basic values are how societies, professions and individuals define themselves. It is true that some expensive projects can fail for technological reasons or due to weaknesses in the infrastructure required for the project's viability. However, it is also true that some health information technology projects fail because a number of stakeholders involved in the design, implementation and use of these systems have very different expectations that often conflict with one another. The situation is even more serious when the failure of an expensive project is rooted in the use of networking to promote hidden interests or objectives, or when it worsens inequities in the distribution of resources or information, or when failure is caused by power struggles within the health system. The failure of expensive networking projects initiated with the promise of benefits for all threatens to damage every level of the relationship of confidence, which is a central value the entire health system rests on.

References

Assadi B. Information and Communications Technologies in the Canadian Health System: An Analysis of Federally-Funded ICT-Related Projects. Ottawa: Office of Health and the Information Highway Information Management and Connectivity Branch, 2003. Information contained in the text box is a modified version of the definitions by B. Assadi (p.13).

Espinosa, AL. Availability of health data: requirements and solutions. International Journal of Medical Informatics 1998; 49: 97-104.

Heeks R, Mundy D, Salazar A. Why Health Care Information Systems Succeed or Fail, Paper No. 9. Information Systems for Public Sector Management. Working Paper Series. Manchester, UK: Institute for Development, Policy and Management, 1999: 1-25.

Littlejohns P, Wyatt JC, Garvican L. Evaluating computerized health information systems: hard lessons still to be learnt. British Medical Journal 2003; 326: 860-863.

Office of Health Economics (London). Special Report: Precious resources in Health Care. Millbank Memorial Quarterly 1979: 265-287.

Paré G, Elam JJ. Introducing information technology in the clinical setting. Lessons learned in a trauma center. International Journal of Technology Assessment in Health Care 1998; 14(2): 331-343.

Péladeau P, Demers D, Prémont MC, Roy DJ. Étude empirique des problèmes éthiques, légaux et sociaux découlant du reseautage de l'information sur les medicaments d'ordonnance. Étude 3. L'Enquête Delphi. Unpublished manuscript.

Roemer MI. Bed supply and utilization: a national experiment. Hospitals: Journal of the American Hospital Association1961; 35:35-42.

Simpson RL. Ethics and privacy in a technologically driven health care network. Nursing Administration Quarterly 1996; 21(1): 81-84.

Tierney WM. Improving clinical decisions and outcomes with information: a review. International Journal of Medical Informatics 2001; 62: 1-9.

Weiner M et al. Using information technology to improve the health care of older adults. Annals of Internal Medecine 2003; 139(5): 430-436.

Chapter 8 - Industry and Business Strategies

Overview

In Quebec and in Canada, the basics of computerization and networking of health information are still to come. The needs for equipment, software, telecommunications services and consultant services are considerable while the resources available to meet them remain limited. Similar needs exist more or less everywhere on the planet. In strictly business terms, there is demand and potentially lucrative markets for anyone knowing how to fulfill it.

In a world dominated by business and money, it is difficult to ignore these realities. Thus, an institution that has developed an in-house application, occasionally at great expense, can see an opportunity to generate some income to at least amortize their investment by marketing it. As well, public powers-that-be legitimately wonder about the appropriateness of using public investments to leverage the growth of local industries and jobs. A number of them, more or less openly, expect the various ministries and public agencies to take these concerns into account in decisions pertaining to computerization and networking in their sector. Thus, those in charge and other decision-makers for computerization or networking projects, small or large, run into questioning or choices that include a business or industry component, because even if these individuals do not have similar concerns or objectives, the providers of equipment and services, their employees and sales representatives certainly do and do not hesitate to express them.

It is already painstaking to reconcile professional, public administrative and democratic guidance reasoning, as well as the respect of human rights and freedoms, in the organization of care and services to the ill and individuals in difficulty, in the promotion of health and prevention of illness¹. This reconciliation only becomes more complex when adding the arguments of business and industry pertaining to the equipment, software, consulting services and health information itself. Pressures arise where these different forms of logic push on towards diverging - indeed, incompatible - conclusions.

In this chapter, we will address the following sets of problems:

• The socialization of the business benefits related to the investments made directly with public funds;
• Industry and employment growth considerations;
• Different business approaches regarding different markets.

¹ See Chapter 1, The Networking of Helth Information

The socialization of business benefits

Public organizations and institutions in the health sector develop technological innovations, expertise and information in-house that can present either certain or hypothetical business potential. Here are three examples.

An example of a marketable networked application

For its own needs, a hospital may develop or had developed an in-house application for managing its patients' menus. On the basis of the content of medical records and the help of dieticians, a networked tool of this nature enables the food service to prepare personalized meals based on every patient's nutritional needs, any intolerances or food allergies, restrictions or needs of a personal, cultural or religious nature and the subsequent phases of their treatments, as well as the changes in their state of health. Other institutions probably need a similar system and accordingly could be interested in the solution that has been developed. Shouldn't the hospital offer them its application and thus obtain a return on its investment?

An example of marketable expertise

The shareable patient record experiment in Rimouski was the first to use microprocessor card technology on a small-scale population in the American hemisphere². As a partner in the project, the Régie d'assurance maladie du Québec (RAMQ) thus acquired unique expertise potentially having great commercial value. Indeed, numerous economic and technological observers predict a great future for the microprocessor card, especially in banking sectors, personal identification and access security for premises and computer systems. Shouldn't the RAMQ find a way to offer its expertise so that potential profits return to the public health system (see Example No. 24, The microprocessor card: A business partnership that is too close, later in this chapter)?

² For further details, read Example No. 7, The Rimouski Experiment, in Chapter 1, The Networking of Health Information.

An example of marketable information

Certain information marketers get statistical data from pharmacies on drug prescriptions filled or from clinics on the frequency with which certain illnesses appear. These data enable them to produce statistical reports and analyses that are sold to various users, particularly drug manufacturers and marketers³. However, health information networks under construction thanks to public funding are going to allow statistical data to be collected that is infinitely more exact, exhaustive and up-to-date. Shouldn't the government that is funding these new networks and a majority of the medical treatments try itself to sell these statistics to business clients?

³ See Example No. 30, Health information for advertising campaigns, in Chapter 13, The Management of secondary uses of health information.

Public expenditures, public benefits?

The set of problems described here is that of "socialization" of a business potential and accordingly, of potential profits. Public expenditures in health have generated a product for which a clientele exists that is willing to pay in order to take advantage of it. Shouldn't this potential for income first benefit the same public sector that has such a need for resources? Probably yes, if we only consider the monetary aspect. A more global economic and social analysis can, however, lead to a different answer (see What reasoning for what market? below). In every case, implementing this principle raises basic questions, some of which are of an ethical nature.

Business partnerships

Barring exceptions, an institution or other public health organization does not have either the mission or the expertise required for marketing a product. Furthermore, it would not be easy for this agency to allocate a portion of public funds, received for health, to operating expenses or venture capital for even the most promising business venture. The agency that decides to go down this road will have to realistically consider going into partnership with a private enterprise or a government marketing agency.

However, there is no set formula for business partnerships ensuring an optimum risk/benefit ratio that is at the same time ethically acceptable. Thus, the pure and simple sale of the product or marketing rights can offer a certain profit to the agency in exchange for minimal levels of risk and administrative involvement on its part. However, this solution can result in the privatization of not only significant potential profits, but also of the control over a technology intended to serve the public. On the other hand, too much involvement on the part of the agency can result not only in financial risk that is too great, or excessive involvement of its staff in an activity that is outside its fundamental mission; it can also encourage the agency to become engaged itself in promoting the use of its product, independently of the actual situations or needs of potential public users (see the following example). Determining the best formula for business partnerships must, then, take into account numerous non-financial factors, such as the product's future and its uses, impacts of the partnership on the agency and its mission and on the perception by third parties.

Industry and employment growth

The response to needs versus jobs

Sooner or later, networking decision-makers are confronted with the potential impact of their decisions on the growth of local industries and jobs. In theory, the needs of the health system are ahead of these considerations. Decision-makers can, nonetheless help local businesses by clearly identifying their current needs and how they are likely to evolve. It is then up to the local entrepreneurs to organize themselves to offer answers that are at least as good as those of their competitors. In practice, however, nothing is ever that simple. Thus, when the Ministère de la Santé et des Services sociaux du Québec [Quebec ministry of health and social services] decided to buy computers for the entire LCSC network, it had to resist strong political pressure because certain conditions of the purchasing plan (especially the basic requirement for technical support seven days a week, 24 hours per day) automatically favoured the large foreign suppliers to the detriment of local suppliers. It was the equipment suppliers who eventually had to make the adjustment.

Respect of individuals versus jobs

Even the legal and ethical protection system can be challenged for industrial and labour considerations. Thus, in 2000, the Commission d'accès à l'information (CAI) had undertaken a review of authorization previously granted to the information agency, IMS of Canada Ltd., to obtain personal information on the prescriptions for drugs filled by pharmacists without consent of the physicians involved. The CAI was probably going to come to the conclusion that IMS did not fulfill one of the conditions set by the law for authorizing communication without consent for research purposes. The firm undertook steps with the members of the Quebec National Assembly and the Quebec government emphasizing keeping roughly a hundred jobs in Montreal and about $15 million in investments in a support activity for the marketing of pharmaceutical products. These steps resulted in the enactment of a bill in December 2001 that introduced a long amendment whose purpose was specifically to legalize and frame IMS's supply of information. It can be argued that the conditions that were finally placed by the CAI in 2002 on this private network offer protection of the rights of the individuals concerned that are at least equivalent to, if not greater than, the initial provision of the law⁵. The fact remains that a gap in the protection plan eventually opened for considerations that were basically industrial.

⁵ Loi modifiant la Loi sur la protection des renseignements personnels dans le secteur privé (L.Q. 2001, ch. 73). Jugdement pertaining to authorization granted to IMS of Canada Ltd. To receive communication of information held Quebec pharmacists concerning physicians (02 00 06).
http://www.cai.gouv.qc.ca/fra/decision/2002/pv020006.pdf

Which logic for which market?

Requirements of the target market

In the first section of this chapter, The socialization of business benefits, we called to mind the scenario of an innovation initially developed in response to a well-defined local need, that proved subsequently to be a success and was then offered to other potential users. However, in a good number of cases, further marketing is contemplated from the first stages of a product's development. This is especially true for commercial developers. In America, the bulk of financially sound demand is still concentrated in the United States, particularly in private institutions and universities. Quebec and Canadian markets are still timid and remain limited in comparison. This is why a number of Canadian developers of electronic networked record systems currently design their applications making the needs of the U.S. market a priority, resulting in the importance of billing functions, pre-authorization for medical treatment based on insurance coverage or the administrative constraints of managed care, and management of patient consent to the communication of information about them in accordance with U.S. law. Canadian institutions are accordingly often confronted with either the offer of products that are suited to a different context from theirs, or with partners who develop custom solutions for them but always with the U.S. market in mind.

"World" or "world class" technologies

In fact, two main market logics square off against each other, more or less. The first tries to fulfill a highly profitable demand of a few big highly developed countries for the latest high tech products. This is particularly the case in the United States, where for a care institution, having the latest cutting edge technology is also a selling feature to attract a clientele in a highly competitive market. Those who share this reasoning often say they want to develop "world class" innovations, read satisfying for the institutions and professionals serving a world elite. The second line of reasoning tries to meet the needs of public health systems - whose resources are necessarily limited - in the most appropriate, economical and sustainable way possible. For lack of another name, we can call this second approach a truly "world" approach as it is more likely to be exportable to a large number of countries in the world, despite the unprofitablity of a clearly smaller demand.

The distinction is not necessarily established according to types or lines of technologies (high-tech versus low-tech, for example). Indeed, applications using all the latest technological innovations may well be those that prove to be the most appropriate, economical and suitable to the pursuit of lasting development. The distinction, rather, must first be made between the reasoning of the target markets: who are the clients and what are their needs?

This consideration is particularly relevant in Quebec and Canada. Our health care and service systems are public while the markets in which we are developing are literally dominated by the composite health system in the United States. This is not only for technology markets but also markets for highly skilled jobs, in medicine and computer science alike. Developers and buyers of networking applications in Quebec and Canada are necessarily subject to the constant conflict between these two logics.

Proprietary or open technologies

To the conflict between "world" and "world class" technology, the conflict must be added between two approaches regarding the management and use of intellectual property rights on innovations. The dominant approach is called "proprietary". Typically, the application is specific to the firm that developed it and does not necessarily follow a standard that enables it to be replaced with another firm's application. This specificity is protected by complete exclusivity in the exercise of intellectual property rights (the obligation to obtain user licences) and the impossibility for purchasers and users to access the programming source code. Accordingly, users cannot check the details of the application's operation for themselves and are as a result, completely dependent on the supplier, including for the correction of bugs, updates or adaptation of the application to their specific needs. In addition to the economic and ethical considerations raised by this approach that maximizes profits, the dependence created makes the users vulnerable to the wishes, as well as to any potential bankruptcy or business re-direction, of the supplier.

The alternative approach is called "open architecture" or "free". In the most elaborate implementation, the provider allows the users to examine the source code, to improve or adapt it to their needs and to offer the improvements to the other users. This cooperative type of application development does not in any way bar the opportunity for providers and users to sell their products at a profit. However, it corrects the dependency on a single provider. In fact, a number of providers, commercial and non-profit, can compete against one another to offer applications and technical support. The "open architecture" approach is particularly well-suited to parallel development and experimentation by different institutions of different applications that, ultimately, will have to function compatibly and in a network. This approach also enables an application to be shared among various institutions - without charge, for example, for institutions in developing countries or in exchange for improvements that the beneficiaries can introduce themselves.

Conclusion

All projects for the development or acquisition of networking applications are faced sooner or later with one or more of the considerations raised in this chapter. These considerations are organized around two issues in particular. The first is the precedence of the search for suitable and lasting responses to the actual needs of the health system and the population based on the often legitimate considerations regarding industry and business development. The second is the search for fair access to existing technological solutions.

Chapter 9 - Participation in the decision-making process

Overview

The decision-making process in the context of health information networking takes on a crucial importance in the objective of promoting the social acceptability and benefit of projects and policies. Numerous specialists agree that by involving the individuals and groups concerned, it is possible to contribute not only to a better enactment of technologies but also to a more suitable connection with the practical realities in the community, indeed, a growth that is more socially beneficial. Beyond every utilitarian argument, there is another reason why involving the stakeholders involved is an ethical imperative: the obligation to assume the costs, the benefits, the implications and impacts of the key decisions gives one at the least, the right to know and, more fundamentally, the right to have one's say.

The bet on the social acceptability and social benefit of health information networking

Perceptions of problems and needs vary

Every networking initiative naturally arises from the desire and work of the stakeholders that are especially interested and motivated. However, all the individuals and groups concerned rarely share in equal measures the perception of the problems and needs to which this initiative must respond. To ensure the success of networking, it is not enough that those in charge be profoundly convinced of the initiative's soundness, nor that they vigorously defend it in the name of constraints, obligations and responsibilities; the success of a project is judged in large part on the basis of the social acceptability and benefit of the tool that has been developed. In other words, it greatly depends on the tool's desirability, its properties and its results as perceived by:

• Those whose information is networked or not;
• Those who benefit from it or not;
• Those who will be able to use it or not;
• Those who are called upon to manage or set up one aspect or another;
• And, those who must assume or bear the costs and impacts.

Accordingly, no real success in networking can be achieved except by implementing technologies that are suitable for the situations and the specific contexts for which these technologies are intended or required. This also poses the problem of appropriate knowledge of the situations and contexts.

Getting away from the experts' influence

In addition, the development of networking takes place in a context in which the financial and technological concerns exert a determining influence on the decisions regarding the allocation of resources. Economic expertise, like technical expertise, is highly valued at all levels of decision-making, and both play a fundamental role in identifying problems, needs and solutions. Networking health information however, poses a variety of questions and demands an array of knowledge that cannot be reduced to the world of technology, economics or even professional practice alone. The plurality of values and interests to be reconciled makes every action begun solely on the basis of these dominant areas of expertise even dangerous.

Considering the human and social factors

The challenge is to not only getting away from the experts' influence but to give the human and social factors their proper consideration. Every innovation process is the opportunity for confrontations between diverging opinions, values and interests. This is even more true for networking, as it makes partners out of realities and stakeholders who weren't partners before. The diversity of points of view and the ensuing fragility of the cohesion poses significant challenges to how the projects will be defined and carried out. If a number of individuals agree that the human and social factors must be taken into consideration, different approaches conflict with each other with regard to how these factors should be dealt with in practice. A pitfall that is as widespread as it is harmful, is that of reducing these factors to the status of sources for failure. To the contrary, they must be considered as much sources for learning and creativity as guidelines for decision-making. By the same token, interdisciplinarity must be valued in steering the networking project, and the intersubjectivity and social interaction between the concerned stakeholders must both also be seen here as a fertile source of teaching and a condition of suitable guidance. The partnership of these concerned stakeholders facilitates a more accurate understanding of:

• the problems to be solved;
• the needs to be met;
• the most suitable means of implementation;
• the conditions and restrictions for use of the latter.

Calling on the experience and knowledge of the concerned stakeholders: an ethical requirement

Before the complexity of networking and the social focus of the anticipated transformations, two characteristics are necessary when making decisions: acuity of judgement and care, in accordance with the principle of caution. Both depend, however on the decision-makers' ability to properly understand the traits of the environment affected by the networking. Only an adequate understanding of the environment enables the issues and concerns raised by a specific project to be properly identified. Therefore, this knowledge is the only thing that will permit action exhibiting acuity of judgement and care - which is why it is important for the decision-makers to know how to solicit the experience, knowledge and opinions of the stakeholders affected or otherwise involved.

However, beyond the search for effectiveness, there are also considerations that are specifically ethical for soliciting these stakeholders' input. First of all, the obligation to assume, often for a long time, the costs, the benefits, the implications and the impacts of these key decisions regarding a networking project gives at the very least to individuals and communities, the right to know and, more fundamentally, the right to have their say, which is why it is necessary to institute formal or informal mechanisms for participation in the project. Moreover, the issues that are specific to health information are sensitive, often of literally vital interest for many, and of public interest for everyone. In themselves, these issues necessarily have an ethical dimension, which makes discussion between stakeholders an ethical requirement for every measure whose purpose is to resolve them. By calling on the whole of experiences and knowledge available as well as the opinions of those who will have to bear the effects of the decisions, discussion clarifies the decision and makes it more pertinent or at least more legitimate.

Participation as a condition for success

The participation of the stakeholders involved in the various stages of the change appears to be from the outset a condition for the social and ethical success of health information networking projects and policies. But as we will state later, participation can take different forms, involve quite varied matters and fit into different times in the decision-making process. Indeed, all participation does not have the same value. It is the most essential at the design stage of the project as it enables the very direction that the change must take to be driven by the full spectrum of reflection. Therefore, it is when participation allows an actual influence on the decision that it best responds to ethical considerations. Certain forms of participation are more like persuasion than discussion. In similar cases, it is more accurate to talk about non-participation or token participation (see below, the three main levels of participation).

Minimal conditions to be respected

The active participation of the involved stakeholders cannot be spoken about if these minimum provisions or conditions are not met:

1. Sufficient overtures on the part of those in charge for informing the public and seeing that the individuals affected have access to the necessary information for participation in the discussion;
2. A balanced presence of the diversity of expertise and knowledge required, including that of the stakeholders that will be subjected to the impacts of the decision;
3. Participation mechanisms that are established before structuring decisions are made, and not only once or, even after, the networking applications are implemented;
4. Considerations and discussion topics that are accessible to everyone and that refer automatically to the issues of common interest;
5. A meaningful commitment on the part of those in charge of the networking to ensure that participation and the results of discussion will be integral parts of the decision-making process.

Pitfalls to be avoided in every networking project

Different examples of networking projects enable the most common types of pitfalls to be illustrated.

How to determine realistic participation conditions

It is possible to determine realistic participation conditions that enable discussion to be opened, promote exchange and begin real dialogue so that the diversity of opinions is expressed and that this approach thus contributes to the success of the projects and politics of health information networking.

The multiple channels for participation

Participation can take different forms and take place at different times over the course of the process. The ultimate goals of participation, that is the outcomes expected by those in charge of steering the change, can also be numerous. There are multiple possibilities between participation from all angles and a categorical refusal to make any overture; for example, the sharing of power, stimulating public discussion, validation of a decision, public relations and persuasion strategy. In realistic terms, participation can be particularly in the form of referendum, conferences, group discussion, consultation and surveys. Therefore, it can be seen very well from the above that not all participation is synonymous with deliberation.

In certain cases, participation is even fictitious as in the case of public relations and persuasion strategy. Holding on to these two options would be contrary to the ethics described in this handbook.

Participation as a relationship of power

Arnstein (1969) describes three levels of participation based on the intensity or the relationship of power observed. These categories help identify the forms of participation that outright encourage the partnership of the stakeholders involved and their actual influence on the decision.

1. Non-participation: no real dialogue takes shape; in establishing contact with the stakeholders, the decision-maker's objective is above all, to persuade and train to facilitate the planned change;
2. Token participation: the decision-maker promotes more exchange and this time allows the affected shareholders to express their point of view through, for example, consultation. But participation remains inadequate to be considered shared power, especially due to the fact that it is not really integrated into the decision-making process.
3. Citizenship power: only this last form of participation corresponds to an effective partnership in the exercise of power; power can be exercised through the partnership or at least through negotiation and the search for acceptable compromises.

The purpose of participation

Every classification of power sharing remains, however, incomplete if it is not matched with an effort to specify the various goals of participation. To simplify, let's say that participation assumes a different meaning depending on whether it has to do with the direction of the change or the conditions for producing the change. Thus, discussing the ultimate goals of a project has many more implications than exchanges about the means of bringing about the change. Discussing the possible impacts of a project or the issues it raises leads to taking action on considerations that are much more crucial than those pertaining to realization strategies. Finally, in opening discussion on the common interests rather than on the specific interests of each, the ethical requirement we describe in this chapter can much better be met.

The contexts of participation

Finally, participation means different things depending on whether it is occurs near the beginning or the end of the change process, or in the management of the new context created by the change. The period when the project is defined is decisive as it is then that not only is the technical tool designed, but when the final objectives of the implementation of the technology are decided. If participation must be encouraged at all the main points of the process, the beginning is when it is shown to be the most essential.

Conclusion

There is no single guide or model for the participatory process. Everything depends on the project, the stakeholders, the context and the issues to be debated. This chapter, however, allows identification of the minimum conditions to be respected, the pitfalls to avoid and the basic questions to ask to encourage the implementation of formal and informal mechanisms that permit a true partnership of the stakeholders affected. We must conclude with this final very important clarification: all the issues addressed in the entire handbook must be the topic of discussion and debate in the context of the participatory processes implemented in view of health information networking.

References

Arnstein, Sherry R, "A Ladder of Citizen Participation", American Institute of Planners Journal, vol. 35 (July) 1969, p. 216-224.

Fondation européenne pour l'amélioration des conditions de vie et de travail, Les chemins de la participation dans le changement technologique. Attitudes et expériences, Shankill (Dublin), Loughlinstown House, 1991.

Working group on the promotion of modernity in the Quebec public health network, Au rythme de vos mots et de vos pas, nous créerons le réseau, Regional Quebec health and social services board conference and Centre francophone d'informatisation des organisations, 2001 (online)
http://www.cefrio.qc.ca/rapports/Rapport%20final%20du%20groupe%20de%20
travail%20MondernitÈ-%20novembre%202001.pdf

Lemire, Marc, "Le politique dans le projet de modernisation technologique du service public de santé. Le paradigme des autoroutes de l'information face à la démocratie", Doctoral thesis, Département de science politique, Université du Québec à Montréal, November 2003.

Thibault, André, Marie Lequin and Mireille Tremblay, Cadre de référence de la participation publique (Démocratique, utile et crédible), Sainte-Foy, Conseil de la santé et du bien-être, 2000 (online)
http://www.csbe.gouv.qc.ca/fr/publications/rapports/20001009_rapp_cfr.pdf.

Office of Intergovernmental and Public Accountability, How to design a public participation program, U.S. Department of Energy, s.d., (online) http://web.em.doe.gov/ftplink/public/doeguide.pdf

Chapter 10 - Changing Relationships

Introduction

Multiple relationships give structure to the health-care field, based on stakeholders' roles and on the missions and roles of institutions or agencies. We are witnessing major restructuring of organizational relationships within the health-care network which entail revising the relationships between stakeholders.

From an information perspective, these relationships are based on the production, sharing and circulation of information, by and for all stakeholders. Such relationships are also at the very heart of the information management taken on by those people responsible, in particular archivists, institutions and network managers. A number of individual and organizational responsibilities are likely to be affected by information networking.

Networking is also likely to cause these relationships to be broken up, roles to be redefined and reorganizations involving new stakeholders, not to mention the multiplication of secondary uses discussed in the previous chapter.

All in all, networking is not limited to the sole support role, i.e. making it possible to circulate information.

Networking moves the places where surveillance and control occur; it increases difficulties in spotting and correcting errors or reduces them, insofar as integrated methods for doing so allow; it affects prescribed operations for pruning and retaining information; it displays professional practices by exposing professional judgements and the resulting actions to greater visibility; it reduces the scope of patients' actual consent or makes the process more complex, thus affecting patients' control over information about themselves.

Thus, despite networking being a method which maximizes the efficiency of health-care services and the safety of care, the nature of these characteristics generates either resistance to the networking project or a tendency to withhold information or restrict its input and, as a result, restrict communication.

Reviewing the changes created in the direct relationships of the main stakeholders seems essential to any information network rollout process.

Reviewing Changes in Relationships

This section proposes certain bases for identifying the changes made to the direct relationships between stakeholders involved or affected by the production and management of information in a networking project.

In order to simplify the presentation, changes have been grouped under three main categories, organized by the stakeholders involved and the nature of the relationships, i.e.:

• inter-organizational relationships, i.e. relationships between institutions or between institutions and agencies, private or public;
• inter-professional relationships;
• relationships between the patient and health-care professionals or institutions or agencies.

Inter-Organizational Relationships

Relationships involving the objective of continuity of service

Beyond the relationships maintained by public or private agencies and institutions, whether administrative or financial or developed for cooperation with the research or public health fields, it might be thought that relationships between dispensers of health care or services are generally intended to provide the continuity of service required by patients. Continuity of service is a part either of the objectives or the very organization of the public health-care network, or it is the result of a program set up to meet the specific needs of a group of patients, often within an integrated network project for individualized care. Depending on the complexity of the services or care required, a varying number of institutions or agencies is involved.

Three levels of integration in the continuity of service

Relationships between organizations are set out based on a model which varies by level of autonomy or integration of the health-care agencies or institutions. Kodner and Kyriacou distinguish three levels of integration: linkage, full integration and coordination.

Integration of services by linkage between organizations

Linkage involves offering established services through protocols or agreements between different organizations to facilitate patient transfers and transition between services. Institutions retain their autonomy for procedures and rules with respect to administration, evaluation and management. In terms of information, we see bilateral or multilateral linkages intended to facilitate relationships involving health-care services or care dispensed. This method of integration by linkage characterizes the relationships between hospitals and the CLSCs in Québec to ensure monitoring of patients who have had surgery and been discharged. The local information and coordination centres (CLIC - Centres locaux d'information et de coordination) which have existed for some time in France represent a multilateral form of linkage.

Integration of services under the direction of a single organization

Conversely, the full integration of services involves a single organization acting as the manager for all services provided. Total management of people is carried out by a multidisciplinary team, within a service-centre type structure which provides management and circulation of information among stakeholders and partners. This type of integration is illustrated by the setting up of outpatient hospital centres such as the Centre hospitalier ambulatoire régional de Laval (CHARL) [Laval regional outpatient hospital centre], day centers or home support services, such as the integrated service projects for older people with decreasing autonomy (SIPA - Services intégrés pour personnes âgées en perte d'autonomie) in Montréal. It exists parallel to institutions and agencies and does not entail changes in their structures or internal administration processes, but rather is based on negotiating contractual agreements between institutions and the organization responsible. These agreements create bridges between the partners, taking into account their respective missions, and, in particular, provide the basis for management by programs for target patient groups. For examples of such programs, see chapter 1.

Integration of services by coordination of organizations

Coordination is based on dialogue between all institutions or agencies from one region which give up some of their autonomy for a joint regional or local approach to services. Coordination entails establishing structures and mechanisms which transcend the organizations involved and which they belong to, adapting their structures, administrative processes and resources in accordance with the partnership agreement. The success of these integrated service networks generally requires the use of a continuous information system which is independent of the organizations, but which they contribute to by compiling information collected or produced concerning the clientele served by the integrated service network.

Information management to support integration

Whichever model of integration is favoured, information management raises many challenges. Agreements are often rather light on specifications as to institutions' management responsibilities, employees' accountability for information or the scope or limitations respecting information circulation. It seems to be assumed that, despite the changes in relationships, the responsibilities of all parties remain basically the same and that it is enough to set up mechanisms to manage patients' consent to information sharing and restrict access to the obtaining of such consent. It must be observed that networking information through the decompartmentalization of institutions or even of the public health-care network is much more complex than that.

Initially, the new relationships created by reorganizing the public health-care service network or introducing integration service networks or programs cause a redefinition of stakeholders' and organizations' roles, both public and private. It is not the intention of this handbook to deal with this question per se, but it is important to remember, for all those who are concerned with the conditions for rolling out an information network, that this type of changes inevitably cause new tensions concerning information, whether or not it is personal, health-related, medical or psychosocial.

Several challenges to acknowledge

For example, identifying the person responsible for producing the information and inputting it, faultlessly, without omissions or errors, in a context of interrelationships and interactions of institutions and agencies, is part of the challenge. In the same way, setting out the use which will be made of it, by whom and under what circumstances, or understanding the processing and transformation resulting from it and those who are responsible for that, may prove complex but is vital for all professionals involved. Lastly, determining who will be responsible for ensuring compliance with rules or record retention schedules or the circulation of information to third parties, if appropriate, is an element which is far from insignificant.

A shared and collective responsibility

Redefining responsibilities for each stakeholder, partner or network manager is crucial. Identifying the roles, duties and responsibilities of each party with respect to the information is necessary. This must be done from the beginning to prevent faux pas or violations of rights likely to harm the patient. In addition, that makes it possible to set up intervention processes about the information and identity of the people responsible for such intervention. It is the job not only of the manager, but also of all those with responsibility for initial production or its new versions and their transformation and use.

The personalized identity of a responsible party

Institutions in the public health-care network give medical archivists or, failing that, a named person, the responsibility of meeting their obligations for protecting information. Document management for partners from the private sector, community agencies or local or regional service groups is done by support staff. Generally, we do not find any individuals assigned to document management, because there are no specific standards which would apply.

Different information management responsibilities for the public and private sectors

Information management standards (plan for classification, pruning, record retention schedule, deletion of information, purging or destruction of the record, etc.) are therefore different depending on whether the record is established and managed by a public agency or a private organization. The same observation applies to obligations imposed on health-care professionals, depending on whether the medical record is held in a private clinic or office or in a public institution. For example, it is possible for pharmacists' record management information network to transmit information about doctors (see example no. 22 in chapter 4), because they are required to comply only for patients' personal information and not professionals', whereas the same information held in an institution's records could not be transmitted to third parties.

In short, the changes caused by the new relationships between institutional partners from the private and public sectors with respect to information management should provoke a detailled review of changes in the relationships between institutions, causing an inevitable revision of the information management process.

To that end, we are proposing the following questions to start the review.

Inter-Professional Relationships

From privileged information to accessible information

The main change brought about by information networking with respect to professional relationships is undoubtedly the greater distribution of information generated by the professional. Inputting information about a patient instantly makes it potentially accessible to anybody whose authentication is recognized by the system. The status of privileged information for the professional concerned blurs to take on the status of data entered for the benefit of all professionals or people involved with the patient or any person entitled to access the network (network managers or administrators, professional orders, risk managers, etc.). The definite advantage in terms of increased safety of professional actions must be measured against the increased risk due to the relative loss of the professional's control over information produced and by the use or processing of that information by other professionals or people involved.

Increased health-care safety

Information networking gives greater safety in professional actions, particularly for those involved with a patient for the first time. Networking makes it possible to quickly get both a patient history and a recent clinical picture. Access to a continuous system of information documenting the various actions taken previously enables professionals to more quickly grasp the situation before them and to move more surely to a diagnosis and determining the treatment required.

Increased risk of vulnerability to errors

Networking information is also likely to make patients and professionals more vulnerable to any kind of error. For example, it might be errors of measurement or writing (test result), judgment errors (diagnosis), access to a particular diagnosis (a mental health problem or HIV), design of application or processing of information (juxtaposition of information on two different patients or inconsistent merging of initial records), etc. Professionals accessing the patient's record for the first time on the network are inevitably influenced by what is found there and their actions are based, in part, on what they retain from it.

A new dimension in professional responsibility

Networking requires professionals to evaluate the information they obtain against their own observations or tests. They must exercise their professional judgment based on all the information available to them, without omission or abstraction, including actions taken by others. In their turn, they must input new information produced into the digital record on the network. In brief, networking is not limited to access to existing information but necessarily includes the responsibility to take into account information obtained and the sharing of newly produced information.

This change in professional practice leads in its turn to a change in relationships between professionals. Thus, health-care information acquires a new dimension or rather the dimension is multiplied by networking: it becomes the bearer of knowledge concerning the professional who produced the information. Health-care information gives information about the practices of other professionals, their competence in keeping their knowledge up to date, their preferred choices of treatment, the attention they pay, or do not pay, to the actions of other professionals, etc.

Redefining individual or collective responsibility

Individual or collective responsibility is increased, particularly in the context of team action faced with the actions of other professionals. The example of prescribing incompatible drugs illustrates the difficulties to be untangled. Who is responsible when a patient is simultaneously taking incompatible drugs, prescribed by general practitioners and specialist physicians, sold by pharmacists and administered by nurses or supervised by other professionals? Who should intervene in such cases? Is it the responsibility of all professionals involved in the case? Of the last one involved? Of the one who gave the prescription, probably, without reading the whole record? Of the pharmacist who filled the prescription? Of the nurse who administers or supervises drug taking?

In short, inputting information into a networked record has significant consequences for professionals, not only with respect to their own professional practice but also the practice of others. Professional actions may less and less be dissociated from the information and knowledge they are based on.

The changes in professional relationships caused by networking are only outlined here. Since the objective of this chapter is to open the door to a more detailled review of these changes, we can only propose questions with which to start studying the changes.

Patients' Relationships with Professionals and Institutions or Agencies

Patients' rights

Traditionally, patients establish health-care and service relationships both with professionals and institutions. In this specific context, with respect to information about them, patients have specific rights of access to and control over the information. Generally, they are able to find out who is involved with their case and who has access to their record. It could be said that, subject to legal and administrative authorizations, the current information management model provides for patients' actual participation in circulating their health-care information.

Patients' role in information transmission

Patients provide the information required by the services they require and authorize access to the information compiled for people providing them with services or care. When transmitting required information, patients may exercise their freedom of communication and transmit only information which is helpful and relevant to the health-care episode or consultation.

Patients' rights over information about themselves

By virtue of the rights they are acknowledged to have, patients may access their record, get a copy of it, and have errors corrected or demand comments be added, when they consider it appropriate. They may also authorize the people of their choice to have access to it. In short, patients' relationships with professionals and institutions are part of a fairly immediate and direct relationship with their records, for which patients have full ability to take action.

Relative reduction in ability to take action

Networking necessarily entails a reduction in the actual ability to take action. When designing a networking project, it is possible to make it so that patients' relationship with the system is defined in such a way that their ability to take action increases; however, we are increasingly witnessing decisions which are more and more determined by network management standards and applications as much as by the objectives of inter-organizational or inter-professional agreements.

Distance from places where surveillance and control occur

Networking distances patients from the places where information is stored, controlled or monitored. Despite a legislative framework which requires it, patients experience problems identifying where information is managed and, in particular, the people responsible. Can they access their networked record? If so, where do they turn to? Who must they contact to obtain a copy of the information about them? Who must they turn to in order to get information updated or an error corrected? How can they be sure of the identities of people accessing their record? All these questions illustrate an important change in the relationship between patients and their records and, consequently, in their relationships with the professionals, institutions or agencies involved in providing services.

Decreasing patients' freedom of communication

Networking also affects patients' freedom of communication with the professional, since they know that their words become simultaneously accessible to a whole group of people. It is no longer as easy for patients to distinguish between various health problems and keep information separate, depending on the professional consulted or the reasons for the consultation. Just think of the care required by the victim of an accident at work who is also receiving mental health care, from a doctor and a psychologist, for reactive depression related to a crisis in his family life.

Accessible information without patients being able to exercise their right to restrict communication

A wide range of situations may justify patients withholding information when they require a service or specific care from an institution or professional, without that necessarily influencing the action taken. Thus, the physician consulted for a sprain does not necessarily need to knew that cosmetic surgery corrected the patient's nose or that the patient has had a vasectomy. That kind of information, by the effect of networking, can become accessible, without patients being able to say anything about it. There are certainly organization and information mechanisms which can provide different access controls based on the needs of people accessing the information. For example, we can think of access by a pharmacist or dentist, who both require only that part of the information that is relevant to their activity; however, this type of information organization, which meets network effectiveness by avoiding the overload of information transmitted, does not offer a reply to the change in exercising patients' freedom of communication.

In short, any networking project entails calling into question patients' freedom of communication.

Thus, beyond the notion of consent, which will be dealt with later on, it is appropriate to be aware of the changes that networking entails in patients' relationships with health-care professionals and institutions. In that respect, we suggest here a few questions to clarify these changes.

References

Bussière C. (2002). Les centres locaux d'information et de coordination (CLIC). Gérontologie et société 100: 75-81.

Health Canada (2002). Sharing the Learning. The Health Transition Fund, Synthesis Series: Department of Supply and Services and Government Services Canada, Ottawa, 2002.

Hébert, R. (2003) L'intégration des services aux personnes âgées: une solution prometteuse aux problèmes de continuité, Santé, société et solidarité: Special issue: 67-76.

Kodner D.L., Kyriacou C.K. (2000). Fully Integrated Care for Frail Elderly: Two American Models, International Journal of Integrated Care, 1(1): 1-24.

Leutz W.N. (1999) Five Laws for Integrated Medical and Social Services: Lessons from the United States and the United Kingdom, Milbank Quarterly, 77(1): 77-110.