Chapter 12
E-Health and Societal and Territorial Intelligence in France: Collective Knowledge Production Issues and New Network Interface Organizations1
12.1. Introduction
The World Health Organization (WHO) considered in 2000 the French healthcare system as the best in the world. However, in late 2008, 74% of French people surveyed considered that their healthcare system was worsening on a daily basis [TRO 08]. Healthcare systems are in crisis in all developed countries. This crisis is, first and foremost, linked to finance with growing budget deficits. In a context of new limited resources, healthcare systems have gained in weight in terms of national economies: 11.5% of gross domestic product in France in 2007 (compared with 5.4% in 1970), according to the organization for economic cooperation and development (Organisation de coopération et de développement économiques). The increasing cost of the healthcare system corresponds to underlying social changes, with an ageing population, the importance of chronic diseases and the increasing use of technology in medicine. The healthcare sector depends more and more on information and communication technologies (ICT) with the development of the concept of e-health. The issues involved are representative of those encountered in our society. This development is a response to the evolution of French-style competitive intelligence (CI) which, in its societal dimensions, corresponds closely to the issues encountered in territorial intelligence. Interest in the healthcare sector is growing in information and communications sciences, as shown by the development of conferences and seminars over the last few years (GRESEC — CRAPE and EHESP, Rennes, October 2008, ACFAS, Ottawa, May 2009, etc.)1.
The new applications of ICT in healthcare contribute to the development of a collective intelligence approach, with aspects of CI in its societal dimensions and aspects of territorial intelligence, particularly in new organizations of network interfaces.
In this chapter, we will first analyze the emergence of e-health as a response to the need to break down borders in the French healthcare system, particularly visible in the intentions of new interface organizations. We will then consider the new territorialization of healthcare management, which contributes to the convergence of the societal aspect of CI approaches with territorial intelligence. After this, we will look at the issues involved in collective knowledge production. We will conclude by showing how the establishment of regional information systems in healthcare may constitute a step toward the construction of societal and territorial intelligence systems for the domain.
12.2. E-health, the convergence of health issues, and ICT
12.2.1. Compartmentalization and crisis in health systems
A healthcare system is based essentially on the articulation between two sectors: primary care and hospital sector. In all developed countries, the cost of virtual barriers (corresponding to the weakness or absence of interactions) is seen as a major cause of the finance crisis in healthcare systems. This problem is particularly significant in France, where opposition exists between the health insurance sector and the state (ministry of health), and the primary care (private and “liberal”) and the hospital sector (public or assimilated hospitals and private clinics). Opposition also exists between different professions: generalist/specialist doctors and treatment in relation to health and the medico-social sector (the relative positions of doctors/nurses/physiotherapists/social workers, and so on). Glouberman and Mintzberg [GLO 01] have shown that divisions exist within hospitals between the four separate worlds of treatment (doctors), care (nurses), administration, and management and highlight the need to improve cooperation.
These divisions are, for the most part, the result of a societal choice. The weight of individualism, the rejection of the German-style model of center-based medicine in favor of one-on-one dialog between doctor and patient, the freedom of installation given to private practitioners with payment for treatment (1927), and the “hospital-centric” system, where hospitals are responsible for almost 50% of expenditure, have shaped the French healthcare system.
In the United States, medical errors may be responsible for between 50,000 and 100,000 deaths per year [BLE 02]; this would be equivalent to between 10,000 and 20,000 deaths per year in France. According to Cordonnier [COR 01], 30% of these medical errors are the result of information management problems and particularly confusion in identification. In France, certain experts consider that the costs generated by divisions, assimilated to a lack of quality, may absorb up to 15% of the resources of the healthcare system. In the United States, Wennberg et al. [WEN 02] estimate that 20–30% of healthcare expenditure concerns treatments that produce no significant improvement in health are redundant or not applicable to the particular case of the patient. In the words of Grimson et al. [GRI 00] “the inability to share information across systems and between care organizations is just one of the major impediments in the healthcare business progress toward efficiency and cost-effectiveness”.
12.2.2. The development of e-health
“Online health” constitutes one of the major concerns of the “information society”. In 2000, the WHO considered that “the road to healthcare for all passes through information”. The first use of computers in the healthcare sector was observed over 40 years ago, and the term e-health was first encountered over 15 years ago [SIL 03]. Since then, there have been considerable developments in the applications of e-health. In the context of a broad approach to e-health, Villac [VIL 04] cites G. Eysenbach, who states that “e-health is an emerging field, at the crossroads of medical information, public health and the economy, which concerns health services and facilitated access to information using the internet and associated technologies. In a wider sense, the term does not only characterize a technical development, but also a state of mind, a way of thinking, an attitude, and a sort of obligation for individuals working in networks to improve healthcare, locally, regionally or internationally, using information and communication technologies”.
The IPTS report on e-health [IPT 04] gives an idea of the diversity of applications of e-health: computerized medical files, information systems, telemedicine, call centers, etc. E-health thus concerns three sectors: the hospital, where the development of ICT is a priority of the 2012 hospital plan in France (access to and transmission of medical information, payments, administrative and financial management, etc.), the primary care (long distance patient care, online appointment systems, computer programs for practice management), and the patients’ homes (hospitalization and home stays, monitoring, and so on). It also applies to all ICT-based equipment, practices, and tools used to promote cooperation between the three sectors (telemedicine, call centers, and computerized medical files) along with access to new services linked to information and coordination (portals, service platforms, etc.).
12.2.3. Evolution of medical practice, computerization, and ICT use
The ways in which medicine is practiced have evolved considerably, a development accelerated by e-health. In 1995, B. Glorion, president of the French order of doctors, highlighted the passage toward more cooperative modes of working: “the reign of the soloist, no matter how talented, is over” [MAL 97]. This evolution corresponds to deep-lying modification in the composition of the medical profession and its representations. Doctors, including an increasing number of women, now wish to reconcile professional careers with family life. The aggravation of problems of medical demographics in certain zones (particularly in rural areas) and the importance of chronic illnesses, particularly linked to the aging population, have an influence on medical practices.
These changes also correspond to evolutions in the role of patients. The patients who have become better informed (largely thanks to Internet), have also become more demanding (with increased litigiousness, following the American model), demanding results and not just methods. We encounter the idea of the “utopia of perfect health”, analyzed by Sfez [SFE 01]. These “new” patients group together in associations, most of which are federated into the inter-association collective for health (collectif interassociatif sur la santé) in France. This general movement can be observed in all countries. In the English-speaking world, we talk of patient empowerment. In France, patient rights were clarified by a law of March 4, 2002 on “patient rights and the quality of the healthcare system”.
According to P. Bonet, president of the UNAFORMEC (continuous medical training), “all developments in our healthcare system pass through the mastery of medical information” [MAL 97]. Computerization constitutes a main response to the crisis in healthcare systems. For Carré [CAR 08], this corresponds to a decision made outside of the healthcare system, imposed in the United States in the 1980s by industrialists (particularly by the automobile industry, experiencing competition from Japan) who found that the cost of health insurance contracts was increasing the factory price. In Quebec, there was the “computerized ambulatory bend”, a move toward dehospitalization. From 1998, the United Kingdom established the ambitious Information for Health program [DEP 98]. In France, the reforms of August 2004 concentrated on three points, including new governance (while maintaining the separation between the health insurance and the ministry of health), use of ICT, particularly through the use of the “magic tool” represented by the personal medical record (dossier médical personnel, DMP), and an accentuation of regionalization in healthcare management.
These policies form part of the “informationalization” process discussed by Miège [MIE 04], corresponding to the extension of information use (and not just computer use) in all sectors of our society, including the private sphere. These data explosions, accelerated still further by the development of the Internet, pose a number of problems, particularly in relation to reliability as a basis for decisions and to the issue of hosting this information. Although these data have considerable economic significance, their use may also pose ethical problems and issues concerning the protection of privacy. For this reason, data have been the subject of particular legislation reflecting national specificities. The European directive of October 1995 considers healthcare data to be “sensitive” information. In France, a law on “Informatique et Libertés” (Computer science and freedoms) was passed in 1978, and the national commission for computer science and freedom (Commission nationale de l’informatique et des libertés) was created to control its application in the aim of protecting citizens from possible abuse in data use (particularly the creation of unauthorized files). The European directive extended this protection of personal rights. It introduced the notion of personal data any data that might be used to identify a person. Authorization to use these data depends on the aims of use (research, general interest) and on the nature of the data itself. France was slow to adapt its own legislation to the European directive (law passed August 6, 2004). In the United States, where freedom to use personal data is much more widespread and accentuated by competition between organizations, the risk of abuse is considerably higher. Congress made the Health and Human Services Department responsible for patient privacy, integrating it into the 1996 Health Insurance Portability and Accountability Act (Office for Civil Liberties). In Quebec (Canada), the Quebec Commission for Information Access plays a specific role.
12.3. Toward a new territorialization of healthcare management
12.3.1. Reorganization of the health system by regionalization
Attempts to respond to the healthcare crisis by developing the use of ICT are linked to the role attributed to regional powers in healthcare management. Unlike other countries, where a stronger tradition of decentralization exists (the Scandinavian states, Germany, Italy, Spain, Canada, Switzerland, etc.), a regionalized approach to healthcare management is a recent development in France. Regional unions of private doctors (unions régionales de médecins libéraux) appeared in 1993, followed by regional health insurance unions (unions régionales d’assurance maladie, URCAMs) and notably regional hospitalization agencies (agences régionales d’hospitalisation, ARHs) in 1996.
This evolution corresponds to developments in planning, particularly the establishment of hospitals and a better level of research: creation of health cards in 1970, and then regional plans for sanitary organization (schemas régionaux d’organisation sanitaire), in 1991. Initially only concerned with the hospital sector (rationalization and reduction of the number of beds), these plans were extended to cover the ambulatory sector, particularly with “territorial medical projects”. These projects were linked to regional public health plans. The role of the regional health observatories (observatoires régionaux de santé, ORS) should also be mentioned. From 2004, regional healthcare projects (missions régionales de santé,) preceded the creation of regional healthcare agencies (agences régionales de santé, ARS), the “star” measure of a law on hospitals, patients, health, and territories promulgated on July 21, 2009. These agencies were established in the course of 2010.
12.3.2. Affirmation of new organizations of innovative interfaces as sociotechnical forms, projects, and apparatus
Morin [MOR 03] and Sainsaulieu [SAI 01] highlight the need for “reliance” throughout our society. This is particularly important in France in the healthcare sector. Experiments to break down divisions have taken the form of new interface organizations with more cooperative practices, often based on ICT use. These projects were particularly innovative, creating previously unknown organizational forms.
The first healthcare networks appeared in the mid-1980s, both in the form of coordinated care networks following the American Health Maintenance Organizations model and as health/social networks, often set up on the initiative of doctors in underprivileged zones seeking new ways of working, particularly in the context of the AIDS epidemic. Health networks, valorized by the law of March 4, 2002, which offered a synthetic description of these networks, are now widespread; around 1,000 such entities are present across France, caring for between 100 and 150,000 patients. The original opposition between health networks and coordinated care networks has given way to a distinction between pathology networks (at varying levels, but often at departement or regional level: diabetes, cancer, bronchiolitis, addictions, etc.) and generalist or “proximity” networks, which generally exist to promote care access for patients with complex pathologies or situations. We are now, in all likelihood, facing a new development: the construction of integrated territorial service networks [ACE 08] with the pooling of activities with other interface organizations in service platforms.
Health networks are no longer alone in their field. They are now subject to competition from local information and coordination centers (centres locaux d’information et de coordination), home-hospitalization establishments (hospitalisation à domicile, HAD), and especially maisons de santé, multidisciplinary healthcare centers, which appear to enjoy the favor of public powers. The maison de santé in Blettterans, in the Jura region of France, thus recently received a good deal of media attention. Since early 2009, the Groupama insurance company and the agricultural social mutual insurance (Mutualité Sociale Agricole, MSA) have joined together, as they had already done for certain healthcare networks, to propose a new territorial approach to healthcare in terms of health districts to respond to the dramatic reduction in the number of health professionals operating in rural areas. Two experiments are underway in the Dordogne and Ardennes regions.
These new interface organizations are all part of a global approach to healthcare envisaged as “complexity intelligence” (Morin and Le Moigne), with particular attention to “dialogies” or double logics (simultaneously opposing and complementary) [MOR 03] as, for example, not only between individual and collective approaches but also between pathology-based and proximity-based approaches, with issues of mixing competences and the creation of a new collective identity based around new cooperative practices. These new organizations constitute test forms with a focus on information and communication, in the sense of organized sharing. These organizations also constitute sociotechnical apparatus as proposed by M. Foucault, who envisaged them as the “network” which may be traced between different elements “of a resolutely heterogeneous group, with discourses, institutions, architectural setups, regulatory decisions, laws, administrative measures, scientific pronouncements, philosophical, moral and philanthropic propositions, in short: what is said and what remains unsaid” [BEU 06]. The “sociology of translation” and particularly the “sociology of the network actor”, considering apparatus as “agents”, fit well into the extension of M. Foucault’s approach [AKR 06]. These interface organizations also constitute innovative project spaces, as seen by Alter [ALT 02] who considers innovation as a “constellation of ordinary activities”, and a collective activity, with the emergence of new rationalities and actors. These organizations innovate by their position as an interface between primary care and hospital, medical and social, by the new cooperative practices developed, by the affirmation of new functions and new professions and through the development of new judicial and remunerative approaches (with payment by year rather than by intervention), and by the use of ICT.
The purposes of these new interface organizations, which correspond to the meeting of healthcare and ICT, are linked to two notions that are emblematic of our post-industrial society: the network and the project. Although the value of these notions is widely accepted, they are also subject to criticism due to their generality and obsessional character: Boutinet, for the project [BOU 01], and Musso, in the case of networks, have strongly criticized these notions, with Musso talking of “rétiologie”, an “ideology of networks” [MUS 03]. D’Almeida [DAL 06] signals that a project corresponds to a focus on communication objectives. Information and communication sciences have highlighted its communicational dimensions. From this viewpoint, projects correspond to two types of operations: organizational and symbolic. This shows the meeting of project and network: “a man of projects is a man of networks and opportunities, a man of everywhere and nowhere whose actions are situated on an extendible canvas”.
As interface spaces favorable to “situated coordination”, these new organizational forms or apparatus participate in a new approach to a territory and may then be considered “as a construct, a result of the practices and representations of agents” [PEC 04]. In years to come, they may constitute the basic, local level for a new “territorialization” of healthcare management currently being established, followed by local hospitals, regional hospital centers, and national centers of excellence within the context of network-based working based on information sharing and new communication processes. The pooling operations (reception, logistics, etc.) and readability (single access point) of these organizations are currently under consideration, particularly through the use of ICT and especially Internet portals and shared tools (shared patient files). The system is moving toward a global range of services integrated in a local context. To improve the clarity of the offer and to improve service provision, these organizations are now faced with issues concerning collective knowledge construction, which broadly correspond to communication challenges through new uses of information and communications processes. For the hospitalization sector, the Larcher report [LAR 08] advises the creation of groups of “territorial hospital communities”.
12.4. E-health and CI: societal dimensions and territorial intelligence
12.4.1. E-health and CI
Martre’s report [MAR 95] defined CI as “the set of retrieval, processing and diffusion activities, with a view to use, of useful information to economic actors”. This report constituted a concrete expression of reflections underway at the time on the subject of economic, or competitive, intelligence in France. This definition of CI promotes the notion of a cycle of information processing. In his preface to the collective publication Les nouveaux territoires de l’intelligence économique [DUV 08], A. Juillet, the long-serving head of CI, provided a redefinition of French-style CI. For Juillet, continuing the themes set out in Carayon’s report [CAR 03], CI exists to help with capitalizing on strong points while reducing weaknesses in a context of generalized competition, by knowing how to acquire necessary information. Theoretically, CI is “the mastery and protection of useful strategic information for decision makers”. Practically, it is “a state of mind, a method and tools which allow us to collect and process all necessary information and data for decision making and to accompany implementation” [DUV 08]. Juillet also distinguishes between “French-style” CI and the approaches taken in the United States or the United Kingdom, considering that the latter use “overly economic” forms of targeting: CI in the United States is all too often reduced to a simple comparative benchmark, and British “business intelligence”, although it has a wider field of action, does not give sufficient attention to the environment.
According to Fuchs [FUC 98], the main challenge confronting the US healthcare system — and those of all other developed countries — is “to devise a system of medical care that provides ready access at a reasonable cost”, in a context of limited resources. The keywords in this context are performance and efficiency, or, to cite the title of a work by Moore, Managing to do better [MOO 00] through the use of new managerial approaches: total quality management, project management, process management, competence management, etc. with a resolutely client-centered approach. All these approaches are based on new uses of information and the development of interactions based on new communication processes.
Amos David [DAV 05], considering CI as a response to a decision problem, presented CI as a process made up of different phases:
– identification of a decision problem;
– transformation of the decision problem into an information problem;
– identification of relevant information sources;
– collection of relevant information;
– analysis of collected information to extract indicators for decision and interpretation of indicators;
– decision making.
With the increase in new uses of ICT, the healthcare sector is increasingly concerned with CI, the main aim of which is to assist stakeholders in decision making. This principally concerns pharmaceutical companies, medical equipment companies, and computer service providers (patent watch, industrial property, and so on). The development of personal medical records attracted the attention of major industrial groups (Orange, Thalès, etc.), which have since taken a step back. Google may also become involved. Web sites also play an important role. In February 2008, the Lagardère group bought the Doctissimo network. These development issues and acquisition strategies linked to CI also apply to another sector of e-health, that of online sale of medications (e-pharmacy), popular in the United states but banned in France, as is long-distance consultation of a doctor by a patient, something that is nevertheless widespread elsewhere (e.g. in Denmark). The development of e-health is influenced by national specificities and is thus connected to the history of mentalities and the evolution of representations.
12.4.2. The convergence of societal and territorial intelligence: a global intelligence approach to complexity
Flichy [FLI 04] puts forward the idea of “connected individualism”. The contemporary individual is, indeed, often connected to multiple networks via the Internet, but is also often isolated. According to R. Debray, “a person only exists when fitted in a territory” [BEA 00], in an idea which insists on the importance of geographical territory as a “relevant context” for all policies, including healthcare. The approach to territories has developed a good deal [PEC 04]. In this spirit, we have looked at the construction of this approach around the synergy of local projects [BOU 08].
The diversity of territories is now widely recognized. In accordance with this evolution, the delegation for territorial development and competitiveness (délégation à l’aménagement du territoire et à l’action régionale, DATAR), created in 1963 in the context of voluntarism under the government of General de Gaulle, changed its name in 2005 to become the interministerial delegation for the development and competitiveness of territories (délégation interministérielle à l’aménagement et à la compétitivité des territoires, DIACT) but it may go back to being the DATAR. Beauchard [BEA 00] considers that a territory is constructed by the meeting of two approaches: the “patrimonial” territory (identity, mentalities, and representations) and the “transactional” territory (mobility and exchanges). As in the case of CI/territorial intelligence, individual/collective, local/global, order/disorder, static/dynamic articulations, etc., we can talk of “dialogies”, or double logics, in a global perspective of “intelligence of complexity” [MOR 03] and sustainable development.
After analyzing the crisis of democracy, Rosanvallon [ROS 08] insists on the importance of proximity and citizen participation (participative democracy) in the creation of a new legitimacy. A few years ago, the author highlighted the need to refound the welfare state. Mucchielli [MUC 06] and Le Boterf [LEB 04] have shown the importance of context to action, and organizations may be seen as “a relevant context for action”.
A. Juillet speaks of Les nouveaux territoires de l’intelligence économique (new territories for CI: judicial, in accounting and finance, cultural, societal or social, and so on). Territorial intelligence and competitive/economic intelligence (which A. Juillet suggests should be more globally envisaged as strategic intelligence) are thus led to converge, particularly through “social or societal intelligence”, which could “become a pillar of the CI of tomorrow” with all the issues linked to sustainable development, “a fantastic opportunity for repositioning” in France [DUV 08]. For P. Clerc, social intelligence, or, in his own words, “societal” intelligence, “allows us to place any strategy in a richer context” [DUV 08].
Continuing the work begun by S. Dedijer, P. Clerc presents societal intelligence as the new territory par excellence of CI. This new approach, according to the author, involves rediscovering the state of mind of “world intelligence”, which has always motivated humanity, first observed in the Sumerian culture, then mètis or cunning intelligence, practical intelligence, or the art of leadership used by the Greeks, symbolized by Ulysses and which, since work of Aristotle, has been largely supplanted by almost exclusive promotion of rational intelligence or logos.
In our opinion, CI in its societal aspects converges with territorial intelligence, as any societal intelligence approach is based in or on a territory. Bozzano (La Plata University, Argentina) defines territorial intelligence as follows: TI = CT + PTA/SDT, so territorial intelligence (IT) = comprehension of territory (CT) + participation of territorial actors (PTA) for sustainable development of the territory (SDT) [BOZ 08]. The participation of territorial actors and the implication of populations in a perspective of sustainable development contribute to the specificity of territorial intelligence with all issues linked to information sharing and the construction of collective intelligence [GIR 04].
For the authors of territorial intelligence, economic intelligence applied to a territory (Intelligence territoriale, l’intelligence économique appliquée au territoire) [FRA 08], there is no ambiguity: “territorial intelligence is an emerging concept which consists of applying the principles of economic intelligence at the level of a territory in order to improve competitiveness”.
12.5. Issues in the production of collective knowledge
12.5.1. Coordination: the complementarity of information and communication
The improvement of coordination between actors, as the central aspect of the project, constitutes the raison d’être of healthcare interface organizations and corresponds to the tight interweaving of information and communication issues to build cooperative practices. The “territory” of these new organizational forms is built up by information sharing and by new communication processes, creating links from interactions. This complementarity contributes to the construction of meaning, and the organization corresponds to the creation of “generalized process-based communication” according to Mucchielli [MUC 06] and may be considered a “semiotic machine”, according to Le Moënne [LEM 06].
From this perspective, negotiation takes on a crucial importance. These new organizational forms or apparatus constitute, first and foremost, places for negotiation between the primary and hospital care sectors and for the recreation of social links. For Bercot, a care network is an innovative process based on the construction of agreements. Its durability depends on the capacity for negotiation of the main actors on different levels: negotiating means a territory, a place, and a reputation [BER 06]. Grosjean et al. [GRO 04] see negotiation as “constitutive and institutive”. It is not simply a source of regulation, but is at the heart of production of the proposed service and the fundamental resource for its definition and implementation to adjust and ensure compatibility between the various systems involved.
From our point of view, the uses of information (in the sense of formatting) and communication constitute “organizing” processes as expressed by the acronym CCO (Communication Constitutes Organization) in North America [PUT 09]2. Communication corresponds to the establishment of relationships and the development of interactions, not just between human actors but also between sociotechnical apparatus. The main aim in promoting the use of information and communication processes is to move beyond the barriers that hinder interaction and limit cooperation.
12.5.2. Information needs for decision assistance and new tools
The information needs of these new interface organizations are found over three levels (micro, meso, and macro), which correspond to different issues. The “micro” level corresponds to relationships, care, and interactions between patients and healthcare professionals: care pathways with issues of traceability of actions and quality of care. The “meso” level concerns leadership of establishments and intermediary organizations, with, for example, T2A, a process for activity-based pricing. These levels are intrinsically linked: data collected to follow actions may also be used to evaluate the services provided by organizations. T2A, which makes use of analytical accounting data, is a tool for organizational management, but is used more as a tool for the attribution of credits (the “macro” aspect of credit distribution and therefore of governance in the healthcare system).
The development of the position of the welfare state, undergoing a crisis and in need of “refoundation” [ROS 98], is based on contractualization and delegation, corresponding to new evaluation issues. The state acts in a less direct manner, becoming a “referee” and source of finance, responsible for evaluating the results obtained by delegated credits. The new objective-based management seen in all fields of activity of public powers supposes a comparison of results in relation to initial objectives (in France, conventions on aims and management (conventions d’objectifs et de gestion) for social security bodies and organic law of finance laws (loi organique des lois de finances) in the public sector and especially universities). Progressively, over 20 years or so, the logic of evaluation, coming from the private sector and the English-speaking world, has gained ground in the public sector, introducing notions of performance and efficiency.
These new strategies make use of new tools. Since 2004, the French have accorded great importance to the “miracle tool” constituted by the DMP, personal medical files, intended to ensure the traceability, quality, and non-redundancy of actions. These original ambitions have constantly been reviewed in a downward direction. The DMP is no longer compulsory and should return to shared status (the “personal” notion related to the dossier being the property of the patient, who was able to “hide” certain data). The position of the DMP needs to be determined in relation to other shared dossiers, such as the pharmaceutical dossier (a success), the cancer communication dossier (dossier communicant cancer, DCC), HAD records, health networks, and, from January 2009, the new project for employee health files, which will probably also take an electronic form. There is a real risk that all these files will contribute to the creation of new barriers. The main role of the new agency for shared information systems (Agence des systèmes d’information partagés, ASIP) will be to avert these risks, if the agency succeeds in defining its boundaries of action in relation to another new agency, the national agency for performance assistance in health and medico-social organizations (Agence nationale d’aide à la performance des établissements de santé et medico-sociaux, ANAP), and so on. Note that, in spite of more significant investment and better project management, the British electronic health record (EHR) is also experiencing difficulties. These computerized health records should now be integrated into shared portals [FIC 08], which will themselves form part of shared information systems, most probably at regional level [FIE 03].
Call centers such as the British NHS Direct or the Catalan Sanitat Respon contribute to patient orientation, unlike call centers known as service platforms (plateformes de service, PFS) provided by health insurance organizations in France, which merely inform users of their rights and are able to carry out simple administrative operations (certificates of cover, etc.). Alongside the various health portals, telemedicine is the most mediatized tool involved in e-health, with particular focus on telesurgery in zones with limited access. Telemedicine also covers telediagnosis and telesurveillance of sensitive patients at home. Databases have also undergone spectacular developments and can now be accessed via Internet portals. The Web sites of the National Institutes of Health (NIH) are among the most consulted in the world, particularly in the case of Medline (National Library of Medicine), available online since 1997. In France, the catalog and index of French-language medical sites (catalogue et index des sites médicaux francophones), run by the university hospitals of Rouen and launched in 1995, is appreciated throughout the French-speaking world. We should also mention the Orphanet site, a multilingual European portal for rare diseases, which operates with the assistance of 200 patient associations and the support of the INSERM. Certain states have developed Internet portals for health education. In Canada, we find the Canadian Health Network (Réseau Canadien de la santé, RCS), a pilot service run by Health Canada. The Scottish Health on the Web service has had considerable success in Scotland. The “Web 2.0”, or social Web, as a support for collaborative networks, has undergone major developments in the healthcare sector.
12.5.3. Evolution of professions and new professions
New interface organizations thus contribute to the modification of positioning of professions and professional identities and to the emergence of new professions. The bronchiolitis network in the Ile-de-France region thus transformed the position of physical therapists, previously an “excluded profession”, into major partners in working with doctors [CAB 05]. These organizations also contribute to the extension of the field of work of nurses.
The new functions or even new professions which emerge are, first and foremost, centered on negotiation and coordination, based on the development of information and communications capabilities, for example, case management nurses following a model used in Quebec to track the care path of complex patients (chronic pathologies and social difficulties) and especially coordinators in health networks. These coordinators act as “couriers” or “translators”, helping to build the collective identity of the new interface organization through the multiplication of interactions, creating convergence between representations of all actors, to create collective meaning and identity, without underestimating the personal or institutional strategies of different actors and the importance of power struggles [CRO 77].
12.6. Shared information systems at regional level: a step toward societal and territorial information systems with a health component?
12.6.1. Issues in the construction of regionalized information systems
Information systems represent the activity of an organization and the interactions between actors. Durampart and Guyot [DUR 08] suggest that we should “examine the organization in the light of its information systems”, based on the information and communications activities making up the work of the organization (what is said, what is known, and what is done) with emphasis on interactions. They perceive the organization as a set of evolving processes and not as a stable state. For them, the information systems constitute “a particular form of expression” (with the importance of the convergence of representations) … “it identifies, represents and formalizes an organization in movement”.
Currently, we are observing a passage from information produced and exploited to individual ends, particularly in primary care medicine, toward information sharing to ensure the traceability of actions and cooperative practices with the intention of arriving at collective information production to improve patient services and control costs (efficiency). Information is no longer just a “source”, but a “resource” abounding in new potential, as predicted by Levitan [LEV 82].
These issues concern the leadership of organizations and coordination. Ficatier envisaged “care coordination information systems” [FIC 08]. The computerization of care processes, and not just the DMP, is used to assist decision. The intention is to guarantee better coordination of healthcare professionals centered on the care path of the patient to ensure continuity and quality of care. Ensuring the interoperability of tools is a major challenge facing industrialists, national governments, and the European Union. In France, the companies responsible for sanitary and social information systems (Les entreprises des systèmes d’information sanitaires et sociaux) constitute a pressure group with the ability to highlight issues and provide criticism of questionable choices. At European level, we should mention the integrating of the healthcare enterprise activities, an initiative on the part of healthcare professionals and industrialists to improve information sharing, concentrating on the coordinated use of recognized standards such as DICOM and HL7.
Although healthcare is left to the care of individual member states, initiatives have been launched at European level. An e-health action plan was envisaged from 2004 with a route map for the adoption of new technologies up to 2010. The European Commission promotes improvements in interoperability between tools and services, establishing a guide for interoperability in e-health. The Commission Recommendation on cross-border interoperability of EHR systems (2008) constitutes a key point, and the interoperability of patient medical files is a first major step. As Fieschi’s report [FIE 03] advises, solutions are mostly envisaged at regional level, notably through Internet portals promoting readability, interoperability, and pooling of proposed tools and services. A good example of this is the Franche-Comté Santé portal (Besançon). Semantic interoperability between data and knowledge is also essential. In a more recent report, Fieschi showed that “the governance of semantic interoperability is at the heart of the development of information systems in healthcare” [FIE 09], both to improve patient care and for decision making and the management of establishments.
12.6.2. Societal and territorial intelligence and building trust between actors around sociotechnical systems
The optimization of information systems is at the heart of the modernization of healthcare [REN 08]. In the context of a global approach, we are challenged to produce collective intelligence to improve the quality of patient-centered care and the efficiency of the healthcare system as a whole. This necessitates the use of new sociotechnical apparatus within interface organizations, allowing us to move beyond traditional divisions, particularly between the primary care and the hospital sectors.
C. Dupuy and A. Torre emphasize the relationship between notions of trust and proximity. “Trust constitutes one element for the comprehension of local dynamics” and is “the mother of action”. Trust allows the construction of a collective future based on the convergence of representations of actors. Trust is built up over time through interactions [PEC 04]. The notion of proximity is also central for Rosanvallon. After explaining his ideas about Counter-democracy, or the politics of the age of defiance, the author seeks new foundations for democratic legitimacy, particularly in the notion of proximity, a word which, in his opinion, expresses the new type of relationships which citizens which to establish with governments. In 2002, a law made use of the term “democracy of proximity” [ROS 08]. From March 2002, in the healthcare sector in France, the term “démocratie sanitaire” has come into use, with increasing involvement of patients and recognition of their rights (patient empowerment).
The creation of trust is essential, both among human actors and in new uses of ICT (information systems, computerized medical files, protocols, best practice guides, and so on). Le Cardinal et al. [LEC 03] demonstrate the importance of a climate of trust between authors in complex projects, particularly in the establishment of information systems, promoting cooperation.
12.6.3. Collective knowledge production: the core of new governance in the health system
Information sharing and collective knowledge production are now at the heart of the new forms of governance currently being put into place in our healthcare system. This knowledge is, by definition, contextualized. The key measure of the law on hospitals, patients, health, and territories (July 2009) is the creation of ARS, which came into effect in 2010. The ARS bring together the ARH, URCAM, and regional delegations for sanitary and social action (délégations régionales de l’action sanitaire et sociale) and were prefigured, from 2004, by regional health missions.
The central question now concerns the tools to put into place to ensure the success of these new ARS. Two agencies have been established, the ASIP and the ANAP, by joining together existing entities. There is already a high authority on health (haute authorité de santé), which is responsible for the evaluation of establishments and the professional practices of private practitioners: this is a new development. Note that the decision was taken in August 2004 to create an institute of healthcare data (Institut des données de santé) to guarantee that these data will remain anonymous. In this context, we also find an inter-regime information system for health insurance (système d’information inter-régimes de l’assurance maladie), which is one of the largest data stores in the world, although the data it holds are used for reimbursement of patients and therefore the duration of storage is limited. The level of coherence of the whole set of entities remains to be seen.
We also encounter a watch dimension, with ORS and the institute for health watching (Institut de veille sanitaire). The URCAMs carried out analyses at regional level, as in the Ile-de-France region, using the territorial analysis of the healthcare system (analyse territorialisée du système de santé) approach.
The new interface organizations can play a role as levers in this evolution, through their role in the creation of links, implication of patients, protection of patient rights, and thus the emergence of “sanitary democracy” in the context of proximity and of entry points for social and territorial intelligence systems devoted to healthcare.
12.7. Conclusion
There is growing interest in the healthcare system in information and communications sciences, with the appearance of workshops and conferences on the subject. Miège has insisted on the importance of the articulation between information and communication on healthcare questions, accentuated by new uses of ICT [LAS 08].
The new uses of ICT in healthcare contribute to the development of a collective intelligence approach involving both economic intelligence, in its societal dimension, and territorial intelligence, particularly in new interface network organizations. The medicine of the future will most likely be based on networks around a patient. This constitutes a deep change, not only in terms of technology but also socially, by modifying the professional identity of different practitioners and particularly doctors, who must accept an external regard on increasingly cooperative practices.
In France, public bodies have been seeking the best interface organization to break down barriers in the healthcare system for the last 25 years. Healthcare networks, promoted by the law of March 2002, are now in competition with multiprofession health centers. Based on new uses of ICT, these new, innovative entities could become levers for the reorganization of the healthcare system. These interface organizations are “hologrammatic”, bringing together all issues, intentions, stakes, and challenges of the whole healthcare system, or even of our society as a whole.
In particular, these issues concern information sharing and collective knowledge production. They are linked to both a new domain of economic intelligence [DUV 08] and to territorial intelligence, for which the implication of actors is essential, in an approach which also has links to sustainable development [GIR 04]. These are “cooperative transactions” as described by Zacklad [ZAC 09], who connects them to his approach of “an economy of conviviality”.
This development is part of major current changes. These evolutions are not just linked to the healthcare sector, but concern our society as a whole. As Musso shows [MUS 03], they correspond to the ambivalence of technology, which may create either a society of knowledge or a society under previously unseen levels of control. The implication of citizens is essential to avoid drifting. In the context of proximity, this is connected to the idea of “sanitary democracy”. This implication corresponds to needs for “reliance” and “social cohesion”, which may be observed throughout our society. Territorial intelligence, with the importance of associations and local collectives, thus converges to the societal approach of economic intelligence, with the new role of the state as “strategist and partner” as suggested by Carayon [CAR 03] as a “reconfiguration” of the welfare state [ROS 98].
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1 Chapter written by Christian BOURRET.
1 GRESEC (Groupe de recherche sur les enjeux de la communication, research group on communication issues) — Université Stendhal Grenoble III, CRAPE (Centre de recherche sur l’action publique en Europe, research center on public action in Europe) — Rennes University 1, EHESP (Ecole des hautes études en santé publique, school of higher education in public health) — Rennes, ACFAS: Association francophone pour le savoir, French-speaking association for knowledge.
2 The work coordinated by Putnam and Nicotera (2009) looks at the constitutive role of communication in organizations: communication is what coordinates activities, creates relationships, and maintains cohesion in organizations. They also highlight the fact that organization is also formalization, and that communication and organization are not equivalent but mutually constitutive.