Janne Lahtiranta
email: janne.lahtiranta@it.utu.fi

Markku I Nurminen

PHR Revisioned -Navigating in the Personal Health Space

Keywords: eHealth, Health Care Information Systems, Electronic Health Records, Personal Health Information Management

The field of health care and well-being services is changing due to economic and societal reasons. One consequence of this ongoing change is that individuals are encouraged to take an active role in their health and well-being related endeavours. The objective of our conceptual work is to support this change and identify mechanisms that can help individuals in their endeavours. Our work is based on the findings of a project that are reassembled under the metaphor of health navigator. The envisioned functions of the navigator are analysed using activity theory as the underlying framework, and as a consequence, human activity as the unit of analysis. The purpose of this integrative work is to create a concept that draws together the complex aspects that define one's position in the health space; the overarching state of health related efforts.

Introduction

In the changing health care landscape of today, navigating through series of health related events (for example, in relation to diabetes) is a challenge to the patient. Primary reasons for this include lack of integrative solutions and fragmentation of health services. For example in Finland, the latter has led to a situation in which most providers offer similar service but the overall volume for a single service is too small [START_REF] Teperi | The Finnish health care system: a value-based perspective[END_REF]. Individual service providers are also disconnected from each other and from the surrounding 'wired world' as the work of standardization organizations has not been able to bring universally applicable solutions to the technical aspects of this dilemma.

On the level of an individual, the consequences of this kind of fragmentation are rather evident, for example, if we look into the U.S. national health insurance program Medicare. It is estimated that "average Medicare beneficiary sees two physicians and five specialists a year, and that those with chronic illnesses see an average of thirteen physicians a year", each focused on the particulars of their own specialty [START_REF] Elhauge | The Fragmentation of U.S. Health Care: Causes and Solutions[END_REF]. It follows from this that it is practically impossible, or at least overtly encumbering, for an individual to track one's position in the 'health space'; the overarching state of health related affairs (cf. [START_REF] Pratt | Personal Health Information Management[END_REF]).

In this paper we define a concept that will help individuals to understand a) where they are in terms of their illness or ailment, and b) what is their current position in relation to the health service providers. Our vision is that if these two goals can be achieved, it is possible to help the willing individuals to become active and cooperative actors in the matters of their health. The function of the concept is illustrated by comparing and contrasting the concept to an ordinary satellite navigation system (e.g. satnav).

Even though our approach is exploratory and conceptual, the underlying theoretical framework is activity theory. Our focus of investigation is on the end-user; how technology facilitates and affects attaining the user's health related aspirations, and what kind of notable transformations emerge with the employed technology. The discussed concept is also considered as a key element in avoiding and solving conflicts that may come up when personal preferences, formal processes of health care and norms of the surrounding society collide.

The findings of this project base on the national MyWellbeing project that ended in 2010. The purpose of the project was to look into the changing service landscape of the ICT-mediated health care services and define means for a citizen for coping with the services that are becoming more and more electronic by nature. In the project, a personal aid for managing individual's health related affairs called The Coper was conceptualized with industry partners on the basis of a state-of-the-art survey on solutions of personal health information management. The ideas presented in this paper are derived from the original concept of the artefact [START_REF] Lahtiranta | Pärjäimen toiminnot ja ominaisuudet[END_REF].

The Citizen as the Subject of Navigation

When using a satnav, the principal actor is the driver. There is a body of authorities (such as the government) that has created the required infrastructure (roads, bridges, etc.). They have also defined rules for using the infrastructure (traffic regulations). However, these authorities are rarely involved in planning and execution of a single trip; the driver eventually makes the decisions about the destination, route and most of the time schedule as well. The satnav is in place as a tool for supporting the decisions made by the principal actor.

Inspired by this, we suggest that even in the health space a willing patient (we prefer the term citizen) should be allowed to take this place instead of being subordinated to the health care delivery system of today. In this, our view to the relationship between the patient and the physician is close to the "informed model" presented by Scott and Lenert [START_REF] Scott | What is the next step in patient decision support[END_REF] in which the physician's role is support the patient and to ensure that he has "an adequate educational space" (ibid., p. 2).

Allowing the citizen to take the 'driver's seat' gives rise to two immediate interpretations. Firstly, regardless of the recent patient-driven developments in the field (cf. [START_REF] Swan | Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified selftracking[END_REF]), the health care delivery system of today is still primarily controlled by the authorities as is the relationship between the doctor and the patient. As such, the relationship can be regarded primarily as a paternalistic one [START_REF] Charles | Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model[END_REF]. In our interpretation, the mechanisms of the health care delivery are reversed (to a reasonable degree) and the role of the patient can be seen autonomous [8; 9]. This implies that even though the patient and the physician co-operate and work towards a common goal in the benefit of the patient, the latter one has the freedom to decide her goals and act accordingly to them (in other words, define how a single trip is carried out). It must be acknowledged that this view is not without its flaws, for example in terms of equality. People who have been more fortunate in terms of making a living are usually able to choose their route and means of travel more freely than the less-fortunate ones.

Secondly, considering the on-going discussion on the ownership and use of patient data (cf. [10; 11; 12]) we suggest that the ultimate owner of the health data is the citizen, not the health service provider or the EHR vendor. In order to successfully navigate to the chosen destination, and to the desired health outcome, the citizens should have up-to-date information on 'prevailing conditions' in a format and language they are able to utilize. In this, mechanisms that a) proof-read and correct health related documents such as patient narratives, and b) translate medical jargon into the language of the citizen are of the essence.

It is also in line with this viewpoint that the governmental data (such as quality information on patient safety issues) originating from the health sector should be opened up and made accessible in the spirit of an Open Declaration on European Public Services [START_REF]An Open Declaration on European Public Services[END_REF] as is already happening in the U.K. If the citizen is to act as a subject of navigation in the health space, all relevant information should be made available. Without it, the navigation occurs on the basis of intuition and anecdotal knowledge.

3 The Current Health Status: Where Am I?

One of the most essential functions of a satnav is the identification of the current position. Using the simplified diagnostic-therapeutic cycle (figure 1) as a basis for analysis, this feature corresponds in health care to observation and diagnosis (acquisition of the location data and visualization of the current location on the device). Whereas a satnav determines the current position on the basis of satellite signals, mobile network, etc., the closest corresponding positioning technology in the case of a health navigator comprises of health service provider's information systems (EHR, LIS, etc.), and in some cases technology acquired by the citizen (such as, blood pressure monitor). However, as it is in the nature of care, human element is an integral element in this positioning. In the health care of today, this means that the patients' preferences and actions are more and more in the crux of clinical decision making. They can be seen as key elements balancing the viewpoints of clinical state and circumstances, research evidence and clinical expertise [START_REF] Haynes | Clinical expertise in the era of evidence-based medicine and patient choice[END_REF].

On practical terms of navigating in the health space, we can imagine that the physician, or some other health care professional, receives on her screen one or more recommended (evidence-based) care pathways ('routes'). Taking citizen's preferences into consideration, one of them is chosen and personalized according to the situational and individual factors. The outcome of this process will be a personalized travel plan that consists of different transitions and different waypoints (such as, acquiring services from different providers). This travel plan of personalized health care is transferred to the citizen's health navigator to support her navigation through the space.

It should be kept in mind that these transitions mean changes in the state of the citizen, not moving from one physical location (or service provider) to another as is often the modus operandi, or dominant mode of operation, in the health care organizations of today. For example in the NHS (U.K.) there are approximately 37 million follow-up appointments per year and a significant portion of these visits are clinically unnecessary [START_REF]NHS: Outpatients: One Stop Models of Care[END_REF]. It is in our idealized view that data should 'move' and devices, such a medical imaging devices, arranged (when possible) within a health care organization according to the patient trajectories in the spirit of Patient Journey Modeling (cf. [START_REF] Curry | A Systems Development Life Cycle Approac to Patient Journey Modeling Projects[END_REF]).

The diagnosis is not always, so to speak, a 'one shot action'. Sometimes detailed investigations, such as laboratory tests are needed in order to arrive to a conclusion that leads to therapy (figure 1). In the context of the used metaphor, these investigations can be seen as a 'route' of its own. The target of such 'meta-navigation' is the correct diagnosis and the steps needed to reach this destination are taken in order to exclude inadequate alternatives. Similar investigations are needed when the progress of a therapy is evaluated. Using a metaphor has the advantage that unlike in the real life, the 'positioning technology' gives immediate analysis of the current state of affairs before, after and at the time of the therapy.

A generic feature of the concept of a route is the notion of purposeful activity. Purpose of a route is to reach the destination one step, or transaction, at a time. In terms of health care, the most obvious route is one from the state of illness or accident to the state of health the citizen had before. We call these kinds of routes progressive. Another type of route can be called preserving; the purpose of the route is not to reach a point in health space that is better than the current one. As certain illnesses are not curable and some injuries cannot be healed, it is sometimes realistic to maintain status quo, even if taking the 'route' seems counterintuitive. The progressive and preserving routes can be mixed with each other. For example, the therapy for diabetes (preserving) may have a subordinated route which aims at losing weight (progressive). It should be also noted that not all activities are active ones; they can be passive as well (for example, through avoiding certain behaviour, e.g. smoking). In this example, the activities can be interpreted of having pre-emptive characteristics as well.

The trigger for the first diagnosis can be dramatic, for example when the citizen comes to the hospital under emergency conditions. Sometimes small symptoms, or even changes in one's view on the world, can create a fracture, an identity disturbance affecting one's perceived mental image. In the basest form, fractures may originate from simple every day events, such as from an experienced pain or from a realization that climbing the stairs at work has become more exhausting than before and the clothes that used to fit are no longer comfortable.

We must be aware that not all citizens are able to take the responsibility of being principal actors in their health related endeavours. Children and many elderly people may need a mediator, a representative, for their activities. Similarly, some groups that behave destructively against other people or against themselves may need such a mediator. In these kinds of cases, the mediator may use the navigator on behalf of the actual beneficiary, providing that there are mechanisms in place that prevent misuse and identify potential health risks for the actual beneficiaries (cf. [START_REF] Lahtiranta | Changing Nature of Best Practices in eHealth[END_REF]).

Acknowledging personal preferences in the health care decision making, and in defining one's current position and route in the health space, borderlines a perspective described in the academic literature as empowerment [START_REF] Aujoulat | Patient empowerment in theory and practice: polysemy or cacophony?[END_REF]; giving power over one's health related decisions and actions primarily to the individuals themselves. This perspective can be seen as an extension to consumerism, a notion based on the "systematic creation and fostering of a desire to purchase goods and services in ever greater amounts" [START_REF] Davidko | The concept of DEBT in collective consciousness (a sociohistorical analysis of institutional discource[END_REF] as it encapsulates a notion of transformation from a passive patient to an active consumer who acquires products and services to according to one's personal preferences and needs. This notion reflects well with the individuals' instantaneous values and attitudes they express towards the (electronic) services of today.

However, in the health care context the notion encompasses some problems that stem from the knowledge base of the non-professionals. Especially when compared to health care professionals, Individuals do conscious and formal1 health related decisions rather infrequently. When they do them, their decisions are often distorted with misconceptions and anecdotal knowledge [START_REF] Ubel | Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public[END_REF]. This observation suggests that the citizen should be encouraged to externalize the diagnosis and allow the observation process to be led by a professional with a higher expertise than she has herself. There is a strong rationale and common sense behind this approach. However, it should be underlined that the overall project and the related information belong to the citizen.

A necessity to place the diagnosis to the hands of professional experts grows stronger whenever the decision leads to treatments with remarkable costs that will be, at least partly, supported by public subsidies. In this case, it is justified to require a legitimation given by an authority for allowing a patient to consume subsidized services (medical imaging, etc.). One way to implement this kind of a control mechanism, that enables the function of universal health care, is to require that there is one responsible and authorized professional present throughout the personalized care plan. Not a professional who is replaced when the current provider organization or the field of medical specialty changes. This kind of an assigned professional, with a view to the overall situation from a clinical perspective, would be in a position to give the needed validation to subsidised treatments.

This kind of operation principle commonly known as case management is not new to the field of health care. For example, in the field of elderly care, case management is a common tool. It is commonly used for tailoring services in order to improve the quality of care of the elderly person [START_REF] Banks | Case management[END_REF]. To distinguish our view from the centralized coordination and leadership present in a professional setting, we acknowledge that the citizen has the overall authority and may act as a case manager even though there is a presence of a professional. With this notion, we want to acknowledge the shortcomings of a citizen in terms of health and medical expertise. The citizen is not a physician regardless of the amount and quality of personal decision support aids in her service (nor is a physician the citizen).

The role of a medical expertise is also highlighted during the journey; positioning can be seen as a feedback on the progress of the planned journey where possible deviations and delays are alerted. Since people rarely have medical devices that automatically detect and react to such deviations in the health space, this kind of feedback is often best performed by a health care professional. In this, the relationship between the citizen and the health care professional can be seen as an active partnership as described by Stevenson [START_REF] Stevenson | General practitioners' views on shared decision making: a qualitative analysis[END_REF].

At the Intersection: Following the Route in the Health Space

Here the health navigator metaphor shows its strength. Equipped with the navigator, the citizen will see an overview of her projects. For each project, past and future transactions, and the current state are displayed. Ideally, this kind of overview will give the citizen a sense of purposefulness and meaningfulness in relation to the selected route. Some of the upcoming transactions (waypoints) may be self-services (such as taking prescribed medication), and transactions that base on professional services can be seen as ordered by the citizen who is the actual beneficiary.

As the citizen has access to the up-to-date location information (e.g. health data), she can decide the used intermediate stopping points (e.g. where health services are acquired). When health related decisions are made, open governmental data can be a valuable addition to other data sources, such as personal measurements or personal genetic data originating from biological repositories (or biobanks). For example, in the data.gov.uk project in the United Kingdoms, the open governmental data is already used in providing tools for the citizens to be used when making health related decisions. A practical example on this is the CareHomeMap application which can be used for tracking care home quality (figure 2). One important consequence of the citizen-centric view on service acquisition and data ownership is that the citizen acts as a point of integration, supporting unification of different projects, service providers, etc. and related information sources into a single coherent collection regardless of the actual source or format of the information. And most importantly, the route is now controlled by the citizen herself rather than any single service provider (or unit).

As discussed, this approach also supports mediation such as case management [START_REF] Banks | Case management[END_REF], for example when one is unable to act due to health reasons (such as declined cognitive capabilities). In the light of the used metaphor, the individual acting in the role of a case manager can be compared to a travel agent. While the travel agency helps in planning the route (articulation), the agent acts as a tour leader taking care of practicalities (execution), such as schedule, co-travellers, etc. Naturally, in the field of health care the duties of a case manager are often more multifaceted than those of a travel agent. The role often encloses more than just coordinating services. Depending on the service provider, the role can be related to unemployment benefits, community resources and support groups (just to name few), covering a wide aspect of issues related to the health and well-being of the citizen.

According to our vision, the health navigator will structure the information according to the life cycles of the active projects, each of them having a route in the health space. On a practical level, the route may be displayed chronologically, for example, in a timeline. If wanted, the navigator can give a reminder of upcoming transactions, and advices for preparing to them. From this perspective, the envisioned solution has properties that support health literacy and patient education, and integrate personalized care instructions into the care pathways. As a consequence, the pathways will become inherently individualistic by nature, supporting the patient choice. With this kind of functionality, it could be possible to complement (or even replace) parts of the more generic and formal guidelines that may not be fully applicable to the current health status of the citizen (for example, in the case of comorbidity). This is in some contrast to the health care delivery of today; even though in the core of the health care has always been the individual, the care has been personalized only to a degree. In practice, since the introduction of scientific methods to medicine at the end of 19 th century, the personal aspects of treatment have "started to become endangered" [START_REF] Fierz | Challenge of personalized health care: To what extent is medicine already individualized and what are the future trends?[END_REF]. A consequence of this development is that the best practices of evidence-based medicine are flexible only from the perspective of their application via clinical freedom; the degree of freedom clinicians are permitted to employ in benefit of the patient [START_REF] Middleton | What is an integrated care pathway, What is[END_REF].

The properties of the health navigator, that enable displaying transactions in relation to each other, also imply that each transaction has an objective. Each objective can be evaluated instantly, or as a subsequent event, thus becoming a part of the follow-up and feedback record. The parts become a whole within the context of individual's health; the individual transactions can be seen as an assemblage from the perspective of a project. The health navigator can also be used to manage the contracts with service providers: for each intended transaction, an appropriate service provider must be found and selected. Scheduling, pricing (i.e. price and reimbursements) and finally actual payments must be performed.

The concept of a route in geographical navigation conforms well to that in the health space. More so when there is a pathway of care that aims at a positive change in the current health status of the citizen, such as in, in the case of an injury or sickness (cf. ibid; [START_REF] Coiera | Guide to Health Informatics[END_REF]). In terms of a route, the idea of a purposeful activity is a useful metaphor as it encloses the concepts of target, activities and motivation under an umbrella. More so, if the activity is by nature progressive and active. Regardless of the nature of the activity, they must be systematically analysed in terms of the goals of the project; otherwise they cannot be regarded as truly purposeful.

Continuing with the navigator metaphor, a satnav can be used with other forms of transport besides the obvious ones (by bicycle or on foot). For example, the navigator could be used in conjunction to collective transportation (train, ferry, flight, etc.). In our analysis, the driver operating in a 'self-service mode' becomes a consumer of external services offered by multiple providers; the citizen is expected to compose a route of feasible transactions that lead to the desired target. In order to reach the destination, the transactions must match with each other in terms of schedule, and there is a need for coordination for changing from one transaction to another.

Naturally, some transactions may require a reservation to be made in advance. Each transaction has a price and the chosen route should be economically feasible to the citizen. When applied to the health care setting, this metaphor means that when the citizen has formulated the purposeful project (i.e. set the destination), the health navigator should help in setting the 'milestones'; when one should be at the reception, how the 'tickets' are arranged (in other words, costs and reimbursement). In addition, the navigator should be able to 'reroute the trip' for example, if the citizen has missed an appointment.

Particularly in the health care setting, there should be a level of reflection present at all times. As discussed in the chapter 3, this implies to an involvement of a professional who supports the navigation efforts with one's professional expertise. While each purposeful project can be seen as singular trajectory from citizen's perspective, the projects may be linked within the level of a care pathway (such as, loss of weight, managing medication and taking care of skin problems can all be linked to the care pathway of diabetes) therefore having an impact on the actual service provisioning.

On the level of care pathways and service provisioning, two additional metaphors emerge, that further validate significance of supporting navigation in the health space; the map and the passengers. The map in an ordinary satnav is often a part of the business model of the device manufacturer. While the acquisition of the device is a singular transaction, the maps need to be updated constantly over the life cycle of the device. In terms of the health navigator, the map can be seen as a similar representation. The field of health care services changes rapidly and in order to acquire the services that meet the citizen's preferences in terms of price or quality (etc.), an up-to-date compilation, a map, of the services is needed whenever a route in the health space is planned.

While some of this information is available from the sources of open governmental data, the information often needs visualization and refinement. In this, new business opportunities for business emerge, for example in a form of Web 2.0 mashups (cf. [START_REF] Laudon | E-Commerce: Business, Technology, Society[END_REF]). Mashups are web application hybrids where different service and data sources are integrated in similar fashion to the CareHomeMap application (figure 2). Creating these kinds of solutions, and distributing them via application marketplaces, is already a tested and proven distribution mechanism for different mobile health and well-being applications, such as the online dermatology application, Skin of Mine2 . In terms of the discussed concept, these kinds of solutions can be a way to actually realize the health navigator, or some of its functions.

The passenger metaphor broadens the discussion towards mediation and acting-onbehalf. While the number of electronic applications in the field of health and wellbeing increases, there will always be individuals who are not willing, or capable, of using them. In order to help these kinds of individuals to conduct their affairs online, supporting mechanisms are needed. From the perspective of navigation in the health space a passenger or in other words, a technology and health literate individual who helps in using the health navigator, can be of the essence. Especially in the today's 'wired world' where 'traditional' services are replaced with their electronic counterparts, mediation mechanisms, that help the individuals to conduct their affairs in the way they choose to, are more than welcome.

Generalizations of the Concept

The notion of purposeful activity has proven to be a powerful generic concept. It lends itself to be applied according to the principles of S.L. Rubinstein's, L. Vygotsky's and A.N. Leontiev's activity theory, a framework explicitly formulated on the notion of human activity as a unit of analysis (cf. [28; 29]). The route can be seen as activity, whereas the transactions can be interpreted as actions through which the activity is realized. Activity also lends itself well for describing the preserving projects which need action without a visible change in order to avoid undesired changes.

Activity theory itself has been successfully used for interpreting and explaining work within the field of health care [START_REF] Engeström | Activity theory as a framework for analyzing and redesigning work[END_REF]. It is not, however, the only application area and the theory can be extended to many other (if not most) human activities. In the close vicinity of the health care are the social services, recreation and even everyday life. These areas that were examined in the context of the original MyWellbeing project as ones into which the generic concept of a purposeful project can be adapted.

There are other areas of life in which citizens can manage their activities with an application similar to the health navigator. One are in particular is highlighted in the context of health and well-being; supporting older people's independent living at home. While the overall objective (or goal) is to continue life at home, it can be realized in multiple concurrent projects. In order to meet the demands associate with the independent life of an elderly person, these projects can include acquiring specific living aids or renovating the house). In terms of services, the emphasis is (in all likelihood) on health care and home help services.

The needs of an elderly person are subject to change. Particularly in terms of services that help in coping with everyday life will probably change over time. The need of services is relative and subject to change; most of use perform daily tasks and maintenance of our homes independently during our working life. Someday our abilities to take care of these mundane tasks are reduced and the tasks become services provided by other parties. Most areas in which help is needed can be conceptualized as purposeful projects. These are operationalized as routes and managed with a solution that is domain-independent and more generic than the health navigator.

Regardless of the field of operation in which the concept is employed, the core functions of the health navigator are still in place. The contracts with the providers must be arranged (incl. financial aspects). The contracts include articulation and execution stages, similar to the diagnostic-therapeutic cycle in the figure 1. The cycle can be reduced to a more generic plan-do-check-act stages already present in the Shewhart Cycle originally defined as a tool for statistical analysis [START_REF] Best | and the Hawthorne factory[END_REF]. Even though the life situation of the citizen is an intangible whole, the contracts and the overall service portfolio should be analysed and operated as a coherent assemblage.

This kind of integration is often expressed as a need to manage the number of service providers, for example according to the principles of case management. This notion can also be seen as a function of trust. It is often easier to build the trust with a few than with a troop of miscellaneous service providers. In addition, creating a route with only few stop points is easier to create and usually more economical to travel (especially in terms of time and effort).

The navigator metaphor and the examples above, demonstrate the integrative power of the original Coper concept. The original concept, and its derivate the health navigator, integrate consistently all episodes of a care pathway, combining the both services and self-services to transactions of equal weight. The concept also integrates multiple parallel routes with each other, for example by making the laboratory results available to all relevant service providers. In this lies another viewpoint to the business logic of the concept; it uses the citizen as a point of integration, complementing the endeavours of the standardizing organizations. The concept also enables building protective privacy mechanisms on the level of the citizen who controls and owns the patient data.

If the needed mechanisms of trust are in place, this function has a potential of lowering the costs born from reorder of laboratory tests and other examinations. This saving can be significant since even though the situation has improved since the 1990's, it is estimated that in 2005 even 30% of tests were reordered in the United States because the result data could not be found [START_REF] Gerntholtz | Electronic medical recordswhy should you consider imlpementing an EMR[END_REF]. Even though the amount of reorders is decreasing as integration capabilities of health care information systems is in general improving, there are still significant savings to be found [START_REF] Hebel | Bridging the Chasm: Effect of Health Information Exchange on Volume of Laboratory Testing[END_REF]. The integrative capabilities have unique take on the partnerships as well since it is effectively a service provider neutral solution, integrating the public, private and the third sector service providers into a collage that is truly personalized health care.

Discussion

Similarly to the original concept of The Coper, the circumpunct of the health navigator is the citizen. This fundamental displacement of physician, or some other service provider from the focal point of health service industry, is of the essence when navigation in the health space is depicted. It supports individual's aspirations of becoming empowered in more concrete terms than just ideological assumption. Analysing the empowerment in the context of navigating in the health space, brings up the work by Aaron Antonovsky [START_REF] Antonovsky | Health, Stress and Coping[END_REF] on salutogenesis; an approach which challenges pathogenesis, taking the health rather than the illness (lack or reduced health) as a cornerstone to one's health and well-being.

Antonovsky also presented a concept of "Sense of Coherence" (SoC) in his works on the role of stress [START_REF] Antonovsky | Unraveling The Mystery of Health -How People Manage Stress and Stay Well[END_REF] which portrays the situation when one has certain clarity of life and believes that the world is under control. The three main components of the concept are:  Comprehensibility. A belief that things happen in an orderly and predictable fashion, and a sense that one can understand events in life and reasonably predict what will happen in the future;  Manageability. A belief that one has the skills or the ability, the support, the help, or the resources necessary to take care of things, and a sense that thing are manageable and within control;

 Meaningfulness. A belief that things in life are interesting and a source of satisfaction, and a sense that things are really worth the effort and there is a good reason or purpose to care about what happens.

The health navigator supports comprehensibility by having the citizen's health information available and providing access to general information, such as Current Care Guidelines (CCGs). The proposed chronological properties of arranging transactions in a relationship with each other can also be seen as a factor donating to this component. These properties also support manageability since it is possible to formulate a predefined route through the health space towards a desired destination.

In addition, the proposed characteristics in terms of managing contracts with the providers (including the financial arrangements) potentially increase the sense of control. In terms of meaningfulness, the donating factor emerges from the purposefulness and meaningfulness of the selected route. As the health navigator supports systemic evaluation of the goals of the project, and as the citizen is the one formulating (possibly assisted) the goals from her individual(istic) perspective, it is possible to provide a comprehensive picture to the citizen on her current health status and on her current endeavours; to help her in determining her position in relation to the pre-set goal.

Conclusions

In today's changing health and well-being landscape, the citizen may face challenges that leave her powerless and lost. To support one's health related endeavours in the world that is becoming more and more 'wired' by nature, and in which the services providers are multiform and often disconnected, a truly personal aid that acts as a point of integration is needed. To depict properties of such a solution, and to highlight the role of the principal actor, the health navigator metaphor was described.

The metaphor was founded on a satnav, a mundane technological innovation that helped in defining what navigation in health space, an over-arching state of health related affairs could entail. The discussed issues included those of a route and a destination, concepts lending a hand to individual-centric data and service integration that is in the core of the health navigator concept. In the surrounding discussion, the role of the citizen as an active subject was touched upon in the context of purposeful activity; an individually driven endeavour, that encapsulates the individual's preferences, values and motivation under an umbrella.

The generic character of health navigator, and the navigation metaphor behind it, addresses some of the current challenges related to the fragmented health care landscape. It seems that the prevalent approach to addressing (technical) challenges associated with the fragmentation is to create centralized data repositories for limited use (such as, for a hospital district). A problem with this kind of monolith health repositories is that there is no connection to everyday life of the citizens; to the expanding sphere of well-being that overlaps with that of health care and is often associated to aspects such as prevention and proactivity. The citizen-centric view built on the navigator metaphor transcends this boundary and is open to everyday life, activities outside the trajectory set by a health care professional that principally bases on the clinical evidence and set guidelines. While this is, without doubt, a valid point of view, there is more to health than just medicine.

As a conclusion, it must be stated that a solution, even one that is close to the idealized model described here, is not on its own enough. There are already interesting solutions 3 in the market that give room to individual-centric management of health-related efforts, while leaving much to be desired in terms of privacy, trust and completeness; issues that are in the core of enabling navigation in the health space. In order to promote the citizen into the position of a subject in navigation, a systemic reform that would challenge the existing business models, service provisioning mechanisms and attitudes of individuals regardless of their role, is needed. With the conceptual work performed above, we hope to open up discussion that could lead to changes in the field that would really give the citizens a possibility of being the ones truly in charge of their health and well-being; to be truly empowered.

Fig. 1 .

 1 Fig.1. Diagnostic-therapeutic cycle[START_REF] Bemmel Van | Introduction and Overview[END_REF]

Fig. 2 .

 2 Fig.2. The CareHomeMap application (http://carehomemap.com/ (accessed December 3 rd , 2013)

We acknowledge that making a decision on what to eat is a health decision, if not necessarily a conscious or a formal one.

https://www.skinofmine.com/ (accessed: November 19 th , 2013)

cf. http://thecarrot.com; https://www.healthvault.com; http://myphr.com/resources/choose.aspx (accessed: December

th , 2013)


Minna Rantanen

Olli I Heimo
email: olli.heimo@utu.fi

Problem in Patient Information System Acquirement in Finland: Translation and Terminology

Keywords: Information Systems, Healthcare, eHealth, Terminology, Healthcare Information Systems

Healthcare information systems and their development has risen to be an issue discussed widely amongst Finnish media and public. The discussion varies from the many faults in design, functionality, usability and the enormous costs these systems produce to the citizens as well as how to best fix these problems. Yet it seems that common terminology with eHealth systems in the discussion is lacking rendering the quality of the discussion far from where it could be. Hence this paper will focus on the issue of terminology-based problems in Finnish public eHealth development discussion.

Introduction

In this paper we discuss about the lack of clear definition both in Finnish and English research and teaching materials concerning Healthcare Information Systems (HIS). This lack of definitionwhich we will later demonstratecreates rather curious and obviously unwanted situations to the society which may hinder the efficiency of the eHealth IS development process nationwide. First of all, the problem lies within the varied terminology in both English and Finnish.

In this contextdue the lack of better termwe have translated the commonly used Finnish term "Potilastietojärjestelmät" as Patient Information Systems (lit., later PIS), whereas electronic patient records (EPR) and electronic medical records (EMR) are more commonly known terms used as the translation. Word "record" does not capture same amount of functionality that "information system" does. The term PIS is used in this paper as a one-time definition to clarify the Finnish-English translation and the Finnish discussion and is not necessarily meant for common useat least without careful consideration and discussion. The paper will focus on this problem in both translation and terminology in Finnish patient information system acquirement.

In next chapter the Finnish healthcare and eHealth areas are introduced. In third chapter the problems concerning the lack of common language are discussed. The reasons to focus for the aforementioned problems are briefly discussed in fourth chapter and fifth chapter introduces the current at-hand definitions and their contradictions with each other. The discussion about how these thing should be developed are analysed in sixth chapter.

Finland and eHealth

Finland differs as an area for eHealth solutions from many countries. As being a North European welfare state, Finland offers almost free medical services to its inhabitants (only minor fees) and participates on the payment of medicines prescribed by medical doctors. One of the key areas that limit the competition in Finnish eHealth market is the language support which is required in both Finland's official languages: Finnish and Swedish (which in larger scale are both minority languages not worth the trouble for many international eHealth software and hardware providers).

In Finland healthcare service is a basic right for every citizen and it is divided into two sectors: public and private. Public healthcare is funded by counties and the state of Finland. Funding is acquired in a form of public medical insurance and small clinical fees. Private healthcare is more expensive but citizens can apply for compensation from state when using these services. Finnish employers are required to pay for healthcare of their employees in private healthcare sector but the patients are often transferred to public healthcare to receive more complex treatment. Every citizen is part of healthcare system even before they are born. Therefore decisions in public healthcare information systems concern every citizen.

In healthcare information systems the scene is dominated by Tieto Oyj (former TietoEnator) c.a. 49% and CGI (former Logica) with c.a. 30% of public healthcare market share. While the eHealth scene in Finland has internationalized, new actors in the market have not been found but moreover the local business' have gone international, e.g. Tieto Oyj, or international companies have bought local ones, e.g. CGI. [START_REF]KanTa-palvelut: Kansallinen potilastiedon arkisto Alustava käyttöönottoaikataulusuunnitelma[END_REF][START_REF]CGI: Historia: CGI:n tarina Suomessa[END_REF][START_REF][END_REF].

Patient information systems have been a subject of both public and professional discussion in Finland of late due to the government and its healthcare districts having procured numerous different PISs, latest of those being Helsinki and Uusimaa Healthcare district's Apotti program (see [START_REF]City of Helsinki: APOTTI-hanke usein kysytyt kysymykset[END_REF]and e.g. [START_REF] Sanomat | Uutisanalyysi: Apotti-hanke saa maksaa tietotekniikan vanhoista synneistä[END_REF][START_REF] Sanomat | Apotti-järjestelmä tulee kaikkien kukkarolle[END_REF][START_REF] Kasvi | Blog entry: Apotin synti [The sin of Apotti[END_REF][START_REF] Tietokone | Apotti-hanke vaatii tehohoitoa [Apotti Program needs intensive care[END_REF][START_REF] Yle | Annamari Iranto: Apotti-järjestelmä kehittyy vuorovaikutuksessa[END_REF][START_REF] Perttu | Viron potilasjärjestelmän kehittäjä pilkkoisi HUS:in Apotin osiin [The Estonian patient information system developer would modularise Apotti[END_REF]). Apotti's latest cost approximation is 162 300 000 euros and yearly costs 77 900 000 euros [START_REF]Apotti-järjestelmän kustannushyötylaskelma[END_REF] which raised quite active discussion about the price and requirements of these systems. Yet it seems that a proper discussion is impossible due the differences in both translation and in terminology: we do not have a definition for PIS. Also healthcare information system is a commonly known term, but with its larger scale: all HISs are not PISs.

Thus in this paper the term eHealth is used as for all electronic healthcare systems; Healthcare Information Systems (HIS) as all information systems in healthcare sector (consisting everything from eHealth except the medical machines that are not exactly information systems for example Therac-25); EPR, EHR and EMRs as registries without proper functionalities and PIS as Patient Information Systema system that is a Healthcare Information System consisting on patient information and focusing on treating patients. In our definition HIS can be an EPR, EHR or EMR, PIS, or e.g. an online medical guide.

On international scale, Oh, Rizo, Enkin and Jadad [START_REF] Oh | What Is eHealth (3): A Systematic Review of Published Definitions[END_REF] found similar problems concerning the definition of eHealth and similar problem has also been addressed by Häyrinen, Saranto and Nykänen [START_REF] Häyrinen | Definition, structure, content, use and impacts of electronic health records: A review of the research literature[END_REF] about Electronic Health Records (EHR). None the less they did not produce exact solutions to the research question we tackle in this paperquite the contrary. We argue that the discussion around the subject of PIS in Finland seems to be more like Plato's Theory of Forms (see [START_REF] Plato | The Republic. Multiple translations[END_REF]), where the idea of a PIS should be in the mind of everyone.

3

The Problem

Yet the Theory of Forms is not a proper tool to discuss about something as complex as patient information systems. Whilst the idea of a horse or a chair might be common for most of us, the idea of a specialised information system is more dependent on who reflects it to the real world. Whilst an engineer can see the problem as a technical one, a sociologist or economist has quite a different view about the subject. Therefore whilst the reflected idea is subjective, we need something more clear to have a discussion upon.

The information system viewed in larger context consists of not only the technology nor the communications of the actors within the technology, but actually from any communication and delivery of information between the actors in real time or in stored format for their work tasks. Thus, the information system can consist of two persons just talking or from a nation-wide or international discussion boards, factory management systems etc. [START_REF] Nurminen | Three perspectives on information technology[END_REF] In this context the healthcare information systems are not only electronic patient records, electronic health records (EHR) nor computerised patient records (CPR), but much more. Therefore, according to Nurminen [START_REF] Nurminen | Three perspectives on information technology[END_REF], a HIS is a combination of software, electronics, papers, doctors, nurses and patients, their stored data, knowledge and communication. Thus the topic, patient information systems, are not only technical problems nor solutions and they should not be viewed as such, but instead as a complex combination of workers and their tools flavoured and tied together with the communication between them. Yet, it sometimes seems that the technical and economical decisions seem to dominate both the discussion and the acquirement process (see e.g. [START_REF] Sanomat | Uutisanalyysi: Apotti-hanke saa maksaa tietotekniikan vanhoista synneistä[END_REF][START_REF] Sanomat | Apotti-järjestelmä tulee kaikkien kukkarolle[END_REF][START_REF] Kasvi | Blog entry: Apotin synti [The sin of Apotti[END_REF][START_REF] Tietokone | Apotti-hanke vaatii tehohoitoa [Apotti Program needs intensive care[END_REF][START_REF] Yle | Annamari Iranto: Apotti-järjestelmä kehittyy vuorovaikutuksessa[END_REF][START_REF] Perttu | Viron potilasjärjestelmän kehittäjä pilkkoisi HUS:in Apotin osiin [The Estonian patient information system developer would modularise Apotti[END_REF][START_REF] Sanomat | It-järjestelmän tilaaminen on taitolaji[END_REF][START_REF]Professor: Reasons for collapse of primary healthcare are freelance doctors and information systems[END_REF][START_REF]Merja Niilola: Terveydenhuollon ithankinnoissa lähes kaikki mennyt pieleen[END_REF][START_REF]IT specialist: Hus' new patient information system going terribly wrong[END_REF][START_REF] Kivekäs | Epic fail i.e. hospitals' IT yesterday, today and tomorrow[END_REF][START_REF] Östman | Patient information systems and their costsmaking sense in wasting money[END_REF]).

Language problems seem to be a relevant factor in public discussions. While it seems that scientific discussion in English concerning different eHealth solutions is carried out with many different terms and in research these are used in contradiction with each other (see e.g. [START_REF] Oh | What Is eHealth (3): A Systematic Review of Published Definitions[END_REF][START_REF] Garets | Electronic Patient Records EMRs and EHRs Concepts as different as apples and oranges at least deserve separate names[END_REF]) the translation to Finnish makes it even worse. When the English terms are translated to Finnish, the translations themselves are in contradiction with each other (e.g. EPR can be translated a number of different ways). This contradiction in contradiction is obviously not a double negative.

Finnish Foundation of Nursing Education provides an online nursing dictionary Hoidokki which translates "potilastietojärjestelmät" as "medical records systems" (MRS) [START_REF] Hoidokki | Asiasanasto [Medical Subject Headings[END_REF]. Other translation can be found from the Apotti Program, where the term is translated as "patient data system" [START_REF]City of Helsinki: What is the Apotti Program about?[END_REF] and Finnish researchers use terms such as "electronic patient record" (see e.g. [START_REF] Valta | The sociotechnical implementation of an electronic patient record. A seven-year follow-up study from expectations to adoption[END_REF]) in their English abstracts. Thus a common translation cannot be found. Problem with EMR's translation is that it represents only the database used to store medical information. Information systems are far more complicated than that.

Whereas the records are mere storages of data, information systems contain numerous functions. Records can be viewed as an archive, a set of papers, while the information system consists of both the papers and the people storing, reading and creating them. Even though Garets and Davies [START_REF] Garets | Electronic Patient Records EMRs and EHRs Concepts as different as apples and oranges at least deserve separate names[END_REF] describe EMR as application environment which consists of many different parts, EMR does not translate to Finnish as 'patient information system'.

Yet the definition is not a dilemma only for Finns, but indeed part of a larger, international problem. The terms EMR and EHR are used as a representation of the same thing even though EMR includes data about how patient has been treated. In comparison, one EHR is a subset of EMR, which is derived from this information e.g. for healthcare decisions concerning whole healthcare system. [START_REF] Garets | Electronic Patient Records EMRs and EHRs Concepts as different as apples and oranges at least deserve separate names[END_REF] Healthcare information systems seems to be the most comprehensive term covering all information systems used in healthcare. Thus all patient information systems are healthcare information systems butas mentioned beforenot all HISs are PISs. In this context though, the patient information system seems to be the most accurate translation for "potilastietojärjestelmät" and represents the context in which the term is used in.

PISs are rarely defined in any Finnish researches even if they are the subject of research. For example articles published in Finnish Medical Journal assume that the term is commonly known [START_REF] Winbland | Patient Information Systems evaluated by brand: All of them require improvement[END_REF][START_REF] Arvola | Potilastietojärjestelmien turvallisuusriskit hallintaan [To control the security risks in patient information systems[END_REF]. When the term is discussed, definitions are often vague and superficial such as "PISs are information systems that save, store and transport patient information [START_REF] Vuokko | Terveydenhuollon toimintaprosessit: Terveydenhuollon yleiset prosessit ja niiden tarkennukset[END_REF]. It might not be a problem that defining PIS is deliberately avoided because too many definitions can and are problems in health informatics as well.

Terms such as eHealth are defined in too many ways to understand what they really mean. [START_REF] Oh | What Is eHealth (3): A Systematic Review of Published Definitions[END_REF] Making up definitions for the purpose of making up definitions does not solve the problem; quite the contrary, numerous different definitions make discussion harder becauseyet againthe common language is missing. Since too many definitions for one term an easily identified problem, definition of PIS should be discussed carefully and not to be taken into use hastilyif at all. Any useful definition should be widely accepted and coherently used.

How people perceive PIS depends strongly on their role in healthcare. For the doctors and nurses PISs are daily used tools whereas economists view them from monetary perspectives. In Finnish media discussion about PISs has been especially focused on poor usability, information security and money (see e.g. [START_REF] Sanomat | Apotti-järjestelmä tulee kaikkien kukkarolle[END_REF][START_REF] Kasvi | Blog entry: Apotin synti [The sin of Apotti[END_REF][START_REF] Sanomat | It-järjestelmän tilaaminen on taitolaji[END_REF][START_REF]Professor: Reasons for collapse of primary healthcare are freelance doctors and information systems[END_REF][START_REF]Merja Niilola: Terveydenhuollon ithankinnoissa lähes kaikki mennyt pieleen[END_REF][START_REF]IT specialist: Hus' new patient information system going terribly wrong[END_REF][START_REF] Kivekäs | Epic fail i.e. hospitals' IT yesterday, today and tomorrow[END_REF][START_REF] Östman | Patient information systems and their costsmaking sense in wasting money[END_REF]). This shapes the conception of PISs in the minds of people that do not know much about topic. While the discussion is strongly focused on making better PISs and eHealth solutions in general, the public has limited ability to participate into the discussion partly due to lack of proper terminology. When this is enforced with the lacking of proper terminology from the professionals, the discussion turns limited towards not only the public but the whole society consisting of the professionals in different areas. Even if they would like to form a neutral concept or at least a form about PISs it is almost impossible since PISs are not defined in any easily findable sources. It can only be imagined how confusing this lack of information is for average patients since it is hard even for scientists researching the subject.

Since the definition of PIS depends strongly on a person it is impossible to have understandable public conversation about the subject that can include and empower everybodyor anybodyin Finnish society.

Koskinen, Heimo and Kimppa [START_REF] Jani | A viewpoint for more ethical approach in healthcare information system development and procurement: the four principles[END_REF] argue that healthcare information systems (HIS) should be built not only to computer ethics, but especially to medical ethics to support the work process the information system is an inseparable part of. They extend the thought to the limit that medical ethics should be used as a common language of on what basis the information system should be built. The idea is more refined in an article by Heimo, Kimppa and Nurminen [START_REF] Heimo | Ethics and the Inseparability Postulate -How to make better critical governmental information systems, ETHICOMP 2014 --Liberty and Security in an Age of ICTs[END_REF] to the extent that the information systems, work process and the ethical basis of both are inseparable from each other. In addition, we argue that the language, the used terminology, seems to be inseparable from the information systems and the work process they support.

Heimo, Koskinen and Kimppa [START_REF] Heimo | Responsibility in Acquiring Critical Governmental Information Systems: Whose Fault is Failure?[END_REF] argue for a public (Habermasian) discourse to be used as a tool for developing information systems. Although this discourse could beas the authors proclaimimportant indeed, in the case of HIS procurement in Finland in its current state it is irrelevant. Without a common language the Habermasian discourse could not even start for its premises are not met. Thus if the Habermasian discourse or any other form of discussion is a part of the solution in procuring, the terminology should be standardised.

Healthcare Information Systems as a Critical Service

Due to the promotion of the health and wellbeing in the society, Healthcare Information Systems are a critical service to the patients. In countries like Finland (this case) where the basic medical care is arranged by the government, it can also be counted as a Critical Governmental Information System, and thus it has some similarities with other CGIS and thus while developing a CGIS, certain additional features to the development must be taken into account to minimize the amount of undesired consequences. Heimo et. al. [START_REF] Heimo | Responsibility in Acquiring Critical Governmental Information Systems: Whose Fault is Failure?[END_REF] define Critical Governmental Information Systems (CGIS) as following:

"A critical governmental information system (CGIS), by definition, is an information system developed for governmental needs including data or functionality which is critical in nature to the security or wellbeing of individuals or the society as whole. It is a system where something invaluable can easily be compromised. These kinds of systems include eHealth, eDemocracy, police databases and some information security systems e.g. physical access right control." Numerous case-studies show that due poor eGovernment solutions lives have been lost. The most classic example in the field is the case London Ambulance Dispach System, where due to the new information system ambulances were sent to wrong targets, causing several deaths and injuries [33, p. 292-293 ]. Other examples include the usage of THERAC-25 radiation treatment machines which caused at least six deaths [START_REF] Fleischman | Electronic Voting Systems and The Therac-25: What Have We Learned?[END_REF] and numerous eVoting solutions, where elections have been compromised numerous times worldwide [35, p. 13-20, 36, 37].

Massive amounts of pre-allocated resources [START_REF] Larsen | Facing the Lernaean Hydra: The Nature of Large-Scale Integration Projects in Healthcare[END_REF] are wasted while the systems are either inoperable or end up being discarded [START_REF] Jani | A viewpoint for more ethical approach in healthcare information system development and procurement: the four principles[END_REF][START_REF] Heimo | The Finnish eVoting Experiment: What Went Wrong?, ETHICOMP 2010 -The "backwards, forwards and sideways[END_REF][START_REF] Nielsen | Willem-Jan Hengeveld -Studying the Nedap/Groenendaal ES3B voting computer, a computer security perspective[END_REF][START_REF] Verzola | The Cost of Automating Elections[END_REF][START_REF] Heimo | How to abuse biometric passport systems[END_REF]. Thus, when countries have been developing CGISs, the room for errors has been exceeded.

In healthcare even the most valued thinglife itselfhas its price. When the resources allocated are not limitless, some medical devices, some medications and some treatments cannot be paidi.e. some people are not treated while others receive their treatment. When the aforementioned resources, that is money and work effort, are being used carelessly, people needlessly lose their access to their own health and wellbeingas well as to their life. Therefore there should be no question should these things be taken with utmost importance. Moreover, if the acquirement of these information systems should be done virtuously (see Aristotle), that the system itself would be a virtuous one, it must be done with the best quality possible keeping the purpose of the systemhealth and wellbeing of the citizensin the centre of the acquirement from the beginning [START_REF]Nicomachean Ethics[END_REF] 1 .

Thus the government-acquired healthcare information systems are of great importance to the Finnish public. Whereas a citizen can choose whether or not to use the services of a certain private medical service provider, usually their only option with public healthcare is to use the services or to suffer. Thus the public discussion of how the citizensthe possible patientsshould be treated is (and as it should be) a matter of clear importance to the whole society.

Definitions and Their Contradictions

The field of healthcare is a field of specialization, divided to various different fields of the medicine all having their own special requirements for IS. That IS must support the work processes and procedures in a very fragmented healthcare system. Thus, many of the problems with eHealth systems, in addition to the other problems in IS development in general, mostly lie within this typical fragmentation of healthcare [START_REF] Jani | A viewpoint for more ethical approach in healthcare information system development and procurement: the four principles[END_REF][START_REF] Danzon | e-Health: Effects of the Internet on Competition and Productivity in Health Care[END_REF]. Yet it seems that if the information system cannot be built on ethical basis supporting the healthcare [START_REF] Jani | A viewpoint for more ethical approach in healthcare information system development and procurement: the four principles[END_REF] or if the terms and definitions are not common the system cannot fulfil its requirements. While the field of healthcare is fragmented, so is the field of healthcare information systems. During the 1960s hospital information system developers in Finland were mainly doctors and amateurs that were interested in making healthcare more efficient. Hospitals developed their own individual systems and cooperation especially in the beginning was rare. Already in the early days the government was funding system development and soon noticed increasing costs of development. Cooperation was soon demanded and the power to direct the development was given to big hospitals. Biggest change in terms of hospital system development occurred in 1990s when counties were made responsible for funding majority of their costs. Counties started to purchase their own systems and information systems were evaluated by their potential efficiency and ability to save money. [44, p.11-30, 45, p. 63-85.] This led to the current situation where both public and private sector have been fragmented information system wise. Many different PISs and versions of them are been used. PISs have been strongly customized to meet the needs of every healthcare units individually. Thus, it is challenging to define the basic body of PIS locallyand international community is yet to give the Finnish discussion much-needed aid due to the problems in defining terms like eHealth and EHR [START_REF] Oh | What Is eHealth (3): A Systematic Review of Published Definitions[END_REF][START_REF] Häyrinen | Definition, structure, content, use and impacts of electronic health records: A review of the research literature[END_REF].

It appears that PIS can include any subsystems that have something to do with patient information or taking care of patients. Because the main task of hospitals is taking care of patients, many of their systems areor at least should besupporting that process and be somewhat involved in handling the patient data. As mentioned not all PISs are HISs although it is hard to separate them. If information systems are viewed as social-technological systems instead of only technological system (see e.g. [START_REF] Nurminen | Three perspectives on information technology[END_REF]), it could be argued that every person working with patients or handling their data is part of PIS.

In Finnish nursing literacy few attempts to define PIS have been made. According to Mäkelä [44,p. 63] PIS is "very wide and diverse software and database compilation that contains all information related to patients health and treatment" and "PIS connects patient information to another information in healthcare".

Mäkelä's definition is based on the idea that patient information makes PIS whereas Korpela and Saranto [START_REF] Korpela | Peruskäsitteet, osa-alueet ja toimijat. [Basic consepts, sectors and actors[END_REF] aim to define PIS through the structure. They divide systems into core system and unit-based separate systems [46, p. 25]. According to them, the core systems are systems that handle patient information in comparison to the separate systems that are laboratory systems and such non-patient-information focused systems. This seems not to clarify the concept of PIS enough.

As another example of vague definitions, SITRA [A Finnish Innovation Fund] define the patient information systems as following: "Patient information system is formed from one or more base system functional units which create functional unit healthcare services and together form a functional unit patient information registry (Arkkitehtuurimääräyssanasto 2007 [unavailable reference]). Patient information systems are e.g. EPR, communication system between hospital and laboratory, radiological image delivering and communication system, healthcare area's information system and image archive."2 [START_REF] Pirttivaara | Healthcare information system investments and their evaluationthe focus on patient information systems[END_REF].

The aforementioned quote is a good example of a definition concerning patient information systems. Not only is it in contradiction with other definitions, but it also lacks a proper definition: while the examples give the reader some image of what the writer has been trying to describe, the term 'functional unit' has as little meaning in Finnish as it has in English.

One part of this research was an e-mail survey for the people in close encounter with PISs such as governmental units, providers of PISs and healthcare districts etc. Surveys contained only one simple question: "How do you define patient information system?" but several of these queries turned out to be e-mail discussions. These original e-mails were sent to Ministry of Social Affairs and Health (STM), Minister of Social Affairs and Health, Finnish National Institute for Health and Welfare (THL), National Supervisory Authority for Welfare and Health Valvira, Accenture, CGI, Tieto Oyj and The Hospital District of Helsinki and Uusimaa and The Hospital District of Southwest Finland. On top of that survey was sent personally to politicians who are or have been discussing PISs within the last few years in Finnish media. The received information was combined with the literature review concerning eHealth solutions.

All the definitions gathered were in contradiction with other definitions. In addition, majority of people who answered the question acknowledged the lack of unanimous definition for Finnish. Only the representative of National Supervisory Authority for Welfare and Health Valvira was sure of the definition and that it has been made and clarified. The aforementioned representative believed strongly that the Finnish law defines PISs clearly enough. He also argued that definition can be found in certain Internet site, although this information was found to be incorrect. Valvira equates PISs with healthcare devices, such as blood pressure monitors and they claim they do not handle definitions but only legal requirements.

Also the preference in using term electronic patient record instead of PIS because of lacking definition came forth during the interviews. In this case tough, as mentioned before, using different term e.g. EPR does not answer the question or solve the problem because it is far too narrow term like previously mentioned EMR. THL representative had in the past tried to define term PIS with her colleagues. Their definition is that "PIS is information system that is meant for saving and handling patient information" [START_REF] Vuokko | Terveydenhuollon toimintaprosessit: Terveydenhuollon yleiset prosessit ja niiden tarkennukset[END_REF].

The amount of different answers to this simple questionand the lack of (clear) answersshowed that the lack of definition is truly a problem. Organizations such as the Ministry of Social Affairs and Health (STM) should have a clear idea what a PIS is, but none of their representatives responded to survey. Even the answers from politicians repeatedly presenting ideas about PISs were lacking. This raises the question about their knowledge about PISs? It seems clear enough that many of these people know that the definition is lacking but only two of the whole set of participants showed interest for the existence of a proper definition. Does this mean that terminology is considered useless or is the question too hard to answer?

As shown before, it seems that no common terminology seems to be found within Finnish eHealth discussion. While the question of the definition of different eHealth termswhen arisenshould at least arise some interest, its importance to the people participating to the discussion seems to vary. This raises an alarming thought: if people are not interested in having a common terminology, are they having the discussion for other purposes than to develop the PIS in best way possible? In any case, this seems to be a matter to be fixed.

6

How Patient Information Systems Can Be Defined?

As mentioned before, instead of being considered as a stand-alone system PISs can be thought as a compilation of various systems and actors. Systems used in healthcare units vary according to their particular needs and thus is hard to define what typical PIS is and more, what subsystems are of PIS and what are not. Patient information is or at least should bethe center of any PIS and it connects many systems together.

Treatment for health and wellbeing of the citizens is the process that is in common with all of these systems because for example treatment regulation dictionaries are also part of PISs. Thus it can be said that current PISs contain systems that support patients treatment process via information as well as many other subsystems directly or indirectly connected to the aforementioned process. These subsystems can include e.g. EMR, billing and ledger information, customer service www-portal, delivery room special services and service providence monitoring. [START_REF] Tolppanen | Elektroninen potilaskertomus[END_REF]49].

As mentioned in previous chapter: THLs definition of the PIS is "a system meant for saving and handling patient information." This seems to be a quite broad definition not really clarifying the term. As noted before, information systems can be people knowing and communicating verbally or via pieces of paper to large computerised systems. If we use this definition, all of the hospital staff that handle patient information in some way are part of PIS. What are the computerised parts of PIS?

Apotti program has so far been a somewhat public project. The planned infrastructure of the future system has been published. The system has been divided into two parts: core and integrated systems. The core systems include for example client and patient records, systems for controlling them and information about treatments and services. The systems are directly involved with patient care taking process. Also, the patient data is used for billing information, but this is not a crucial part of the process.

[49] Integrated systems are systems of specialized medical healthcare units and other systems which are involved with patient data but not in same amount as previously mentioned systems. For example laboratory systems are integrated systems.

Other PISs are like puzzles that have been put together accounting to healthcare units' needs. Which puzzle pieces the units have selected remains largely a mystery. PISs are collections of subsystems that use patient data in particular unit of healthcare. (e.g. [START_REF] Pirttivaara | Healthcare information system investments and their evaluationthe focus on patient information systems[END_REF].)

One approach could be the approach of functionalities and their levels of importance. While client and patient records, medication control and log data are obviously core functions in any PIS solutions, it can be argued that billing is not. This obviously leads to certain problems not the least being the subjective requirements from the system from different interest groups. E.g. a hospital could not fund its functions long, if it could not do billing. Therefore more than mere functionalities must be the key for the definition.

Another method for defining is an approach from the content. The most important information within the PIS is the patient information. The main goal of storing patient information is to give access to patient information. With this approach though PISs and EMRs, EHRs and EPRs can easily be equated with each other.

Third method for defining could be the definition through the structure, i.e. through the analysis of sublevels of the system. This seems to be the main definition method used to define Apotti system. Through this method patient information system could consist from various different systems with some overlapping functionalities. The sublevels could be patient information systems themselves, but they also could be mere EMRs, databases, registries or actors. In Apottis case the PIS can be defined to contain the core functions (see [49]). This, although clarifying definition, seems to be a case-specific method which always requires another method to support the definition.

Fourth methodand the most used methodis through examples and negations. With this method examples of PISs and non-PISs are delivered for the explanation and definition of a PIS. Although being the clearest of the methods available yet, this method suffers from the similar problems than the aforementioned Theory of Forms.

Therefore it seems that there is no easy way out of this yet important dilemma and it seems that a good and exact definition requires more analysis. While the approximate idea could be delivered from the aforementioned directions a usableor even a more definedidea still requires more analysis and discussion. Our future research will concentrate on the combination of the methodologies in defining the terminology more accurately within both national and international contexts.

Conclusions

As shown above, it seems that little common language exists in Finnish healthcare information system development discourse. Due to the lack of proper and meaningful discussion the problems not only appear as a linguistic one but yet a problem in the whole acquirement process of procurement, development, implementation and upkeep.

Due to the difficulties in defining eHealth [START_REF] Oh | What Is eHealth (3): A Systematic Review of Published Definitions[END_REF], EHR [START_REF] Häyrinen | Definition, structure, content, use and impacts of electronic health records: A review of the research literature[END_REF] or the defining of PIS, it can be presumed that this problem is not unique to Finnish discussion but also exists in other countries. The global terms as well as the localised terms should be made if not unambiguous at least understandable.

To have a discussion with one another we require a common set of terms understood by everyone. To develop complex multidisciplinary information systems we need a possibility for discussion. To enhance our level of healthcare we require complex multidisciplinary information systems. Thus, the further development of terminology in the subject is not only recommended but required.

Therefore our future research on the topic will focus on more defined glossary concerning patient information systems and other healthcare information systems so that public discussion about the subject will have a possibility to flourish.

NE 1096a10-1098b10.

"Potilastietojärjestelmä muodostuu yhdestä tai useammasta toimintayksikön perusjärjestelmästä, jotka tuottavat toimintayksikön terveydenhuoltopalveluja ja yhdessä muodostavat toimintayksikön potilasrekisterin (Arkkitehtuurimäärityssanasto 2007). Potilastietojärjestelmiä ovat esimerkiksi potilaskertomusjärjestelmä, laboratorion lähete-ja lausuntojärjestelmä, radiologisten kuvien lähete-ja lausuntojärjestelmä, terveydenhuollon aluetietojärjestelmä sekä kuva-arkisto."


Michel Mollard

Non covered vertices in Fibonacci cubes by a maximum set of disjoint hypercubes

Keywords: Fibonacci cube, Fibonacci numbers, AMS Subj, Class, (2010):

.

Introduction

Let n be a positive integer and denote [n] = {1, . . . , n}, and [n] 0 = {0, . . . , n -1}. The n-cube, denoted as Q n , is the graph with vertex set

V (Q n ) = {x 1 x 2 . . . x n | x i ∈ [2] 0 for i ∈ [n]} ,
where two vertices are adjacent in Q n if the corresponding strings differ in exactly one position. The Fibonacci n-cube, denoted by Γ n , is the subgraph of Q n induced by vertices with no consecutive 1's. Let {F n } be the Fibonacci numbers:

F 0 = 0, F 1 = 1, F n = F n-1 + F n-2 for n ≥ 2. The number of vertices of Γ n is |V (Γ n )| = F n+2 .
Fibonacci cubes have been investigated from many points of view and we refer to the survey [START_REF] Klavžar | Structure of Fibonacci cubes: a survey[END_REF] for more information about them. Let q k (n) be the maximum number of disjoint subgraphs isomorphic to Q k in Γ n . This number is studied in a recent paper [START_REF] Gravier | On disjoint hypercubes in Fibonacci cubes[END_REF]. The authors obtained the following recursive formula Theorem 1.1 For every k ≥ 1 and n ≥ 3 q k (n) = q k-1 (n -2) + q k (n -3). * Institut Fourier, CNRS Université Grenoble Alpes, email: michel.mollard@univ-grenoble-alpes.fr 1 In [START_REF] Saygı | Counting Disjoint Hypercubes in Fibonacci cubes[END_REF] Elif Saygı and Ömer Eǧecioǧlu, solved an open problem proposed by the authors of [START_REF] Gravier | On disjoint hypercubes in Fibonacci cubes[END_REF]. They proved that asymptotically all vertices of Γ n are covered by a maximum set of disjoint subgraphs isomorphic to Q k thus that

Theorem 1.2 For every k ≥ 1, lim n→∞ q k (n) |V (Γn)| = 1 2 k .
The ingenious, but long, proof they proposed is a nine cases study of the decomposition of the generating function of q k (n). The purpose of this short note is to deduce from Theorem 1.1 a recursive formula for the number of non covered vertices by a maximum set of disjoint hypercubes. We obtain as a consequence an immediate proof of Theorem 1.2.

Number of non covered vertices

Definition 2.1 Let {P k (n)} ∞
k=1 be the family of sequences of integers defined by (i

)P k (n + 3) = P k (n) + 2P k-1 (n + 1) for k ≥ 2 and n ≥ 0 (ii)P k (0) = 1,P k (1) = 2,P k (2) = 3, for k ≥ 2 (iii)P 1 (n) = 0 if n ≡ 1[3] and P 1 (n) = 1 if n ≡ 0[3] or n ≡ 2[3].
Solving the recursion consecutively for the first values of k and each class of n modulo 3 we obtain the first values of P k (n). Proof. From (i) we can write

n mod 3 0 1 2 P 1 (n) 1 0 1 P 2 (n) 1 2 3 n + 4 3 2 3 n + 5 3 P 3 (n) 2 9 n 2 + 2 3 n + 1
P k (n) = 2 p-1 i=0 P k-1 (n -2 -3i) + P k (r).
For any integer d the classical Faulhaber's formula expresses the sum n m=0 m d as a polynomial in n of degree

d + 1. Thus if Q(n) is a polynomial of degree at most d then n m=0 Q(m) is a polynomial in n of degree at most d + 1. Let Q ′ (m) = Q(m) if m ≡ 0[3]
and 0 otherwise. Applying this to Q ′ we obtain that n m=0,m≡0 [START_REF] Saygı | Counting Disjoint Hypercubes in Fibonacci cubes[END_REF] Q(m) is also a polynomial in n of degree at most d + 1. Thus if P k-1 (n) is a polynomial in n of degree at most k -2 then p-1 i=0 P k-1 (n -2 -3i) is a polynomial of degree at most k -1. Since for a fixed r P 1 (n) is a constant, by induction on k, P k (n) is a polynomial in n of degree at most k -1.

Theorem 2.3 The number of non covered vertices of Γ n by q k (n) disjoint Q k 's is P k (n).
Proof. This is true for k = 1 since the Fibonacci cube Γ n has a perfect matching for n ≡ 1 [START_REF] Saygı | Counting Disjoint Hypercubes in Fibonacci cubes[END_REF] and a maximum matching missing a vertex otherwise. For k > 1 this is true for n = 0, 1, 2 since the values of P k (n) are respectively 1,2,3 thus are equal to |V (Γ n )| and there is no Q k in Γ n . Assume the property is true for some k ≥ 1 and any n. Then consider k + 1. By induction on n we can assume that the property is true for Γ n-3 . Let us prove it for Γ n . From Theorem 1.1 we have q k+1 (n) = q k (n -2) + q k+1 (n -3). Thus the number of non covered vertices of Γ n by q

k+1 (n) disjoint Q k+1 's is |V (Γ n )|-2 k+1 q k+1 (n) = F n+2 -2 k+1 [q k (n-2)+q k+1 (n-3)] = F n+2 -2•2 k q k (n-2)-2 k+1 q k+1 (n-3). Using equalities P k (n -2) = F n -2 k q k (n -2) and P k+1 (n -3) = F n-1 -2 k+1 q k+1 (n -3) we obtain |V (Γ n )| -2 k+1 q k+1 (n) = F n+2 + 2(P k (n -2) -F n ) + P k+1 (n -3) -F n-1 .
From F n+2 -2F n -F n-1 = 0 and 2P k (n -2) + P k+1 (n -3) = P k+1 (n) the number of non covered vertices is P k+1 (n). So the theorem is proved.

For any k, since the number of non covered vertices is polynomial in n and

|V (Γ n )| = F n+2 ∼ 3+ √ 5 2 √ 5 ( 1+ √ 5
2 ) n we obtain, like in [START_REF] Saygı | Counting Disjoint Hypercubes in Fibonacci cubes[END_REF], that

lim n→∞ P k (n) |V (Γ n )| = 0 thus lim n→∞ q k (n) |V (Γ n )| = 1 2 k

Table 1 :

 1 P

	2 9 n 2 + 8 9 n + 8 9	2 3 n + 5 3

k (n) for k = 1, . . . , 4 Proposition 2.2 Let n = 3p+r with r = 0, 1 or 2. For a fixed r, P k (n) is a polynomial in n of degree at most k -1.


Benjamin Gilles

Charles De Bourguignon

Pierre Croisille

Grégoire Millet

Olivier Beuf

Magalie Viallon

Au

Automatic segmentation for volume quantification of quadriceps muscle head: a longitudinal study in athletes enrolled in extreme mountain ultra-marathon

de niveau recherche, publiés ou non, émanant des établissements d'enseignement et de recherche français ou étrangers, des laboratoires publics ou privés.

Automatic segmentation for volume quantification of quadriceps muscle head: a longitudinal study in athletes enrolled in extreme mountain ultramarathon Benjamin Gilles 1 , Charles de Bourguignon 3 , Pierre Croisille 2;3 , Grégoire Millet 4 , Olivier Beuf 3 , Magalie Viallon 2;3 1 LIRMM; CNRS (UMR 5506) Université de Montpellier,France 2 Department of Radiology, Centre Hospitalier Universitaire de Saint-Etienne, Université Jean-Monnet, France, 3 CREATIS; CNRS (UMR 5220); INSERM (U1044); INSA Lyon; Université de Lyon, France, 3 Department of Radiology, Centre Hospitalier Universitaire de Saint-Etienne, Université Jean-Monnet, France. 4 Institute of Sport Sciences, University of Lausanne, Switzerland.

Purpose: Acute loss of skeletal muscle mass is a common feature of several pathologies such as stroke, cancer, chronic obstructive pulmonary disease. Whatever the pathology leading to muscle loss, it is associated with worse outcome and hindered quality of life. Whatever the pathology inducing muscle wasting, worse outcome is leading to prolonged hospitalization, prolonged weakness and less efficient rehabilitation. Having a none invasive method to accurately quantify muscle mass is of crucial interest to follow procedure that could prevent muscle wasting and restore physical capacity, mobility and optimize motor recovery. The aim of the current study is to propose an automatic segmentation technique to quantify muscle mass.

Materials and methods:

The automatic segmentation of 3D quadriceps volumes was performed using a deformable registration technique 1,2 applied to 3D isotropic in-phase (IN), out-phase (OUT), and calculated fat (F) and water (W) images obtained using a double-echo gradient echo Dixon coronal acquisition (Fig1). An initial model was defined by manually segmenting all quadriceps head of interest (vastus medialis, vastus lateralis, vastus intermedius and rectus femoris) and bones (femur, patella and pelvis) from one subject. After conversion to a 3D triangle mesh, this model was considered as a reference template for the registration process. This template was iteratively deformed to match contours in target images from other subjects enrolled in the study. The method was tested in a longitudinal study in athletes enrolled for the most extreme mountain ultra-marathon (The Tor des Géants, Courmayeur, Italy: +24000 positive elevation, 330km). 51 athletes were scans at departure, 27 finishers at the arrival and 2 days after recovery, leading to 105 datasets that were segmented in total.

The deformation process was driven by external forces to maximize the correlation between reference and target images around the surface 1 , and internal forces to maintain smooth surfaces 2 . The contribution of external forces was iteratively increased to perform a robust coarse-to-fine alignment. 3D volumes were then computed using the final meshes obtained for each quadriceps head. For computing image correlation during registration, all four contrast water, fat, IN-phase and OUT-phase images were compared, including the fusion of all contrast channels/images. The accuracy of the automatic segmentation was assessed based on seven manually segmented datasets (~500-640 axial slices segmented for each of the 7 subjects). The dice similarity coefficient 2,4 measuring the overlap of segmentations was used: DSC =2a/(2a+b+c) cÞ, where a is the number of voxels shared by the expert manual segmentations and the automatic segmentation, b and c are the number of voxels unique to the two segmentations, respectively.

Results: Computation time for the automatic segmentation, including the two sides, was approximately 3 minutes (when using all contrast channels) and 1 minute (when using one contrast). The mean Dice coefficient between automatic estimation of head boundaries using a) In-phase, b) Out-phase, c)Fat, d) water and e) the fused image obtained using all contrast channels, and the manual reference are given in Table 1 for all individual muscle heads, and for all muscles fused together (row 'all'). The mean volumes for Rectus Femoris (RF), Vastus Intermedialis (VI), Vastus Lateralis(VL) and Vastus medialis (VM) were measured for all 3 times points of the race. The mean total volume of the quadriceps shows a slight 6,6% increase at the end of the race compared to baseline before the race, that still persist 3 days after recovery (7.5% increase vs baseline).

Discussion & conclusion: For all quadriceps head of interest, the best automatic segmentation accuracy was obtained when using the calculated Water image (DSC=0,946) before the combined channel (DSC=0,938). The mean volume increase in total induced by the race is in the same order as the inter-observer manual segmentation differences (~7,1%), or manual to automatic differences (4,8%). Since large differences were also observed between subjects, these results should be analyzed at the individual level, to identify if the quadriceps volume increase relates to the higher inflammation level observed in the legs of most athletes after extreme eccentric and prolonged solicitation. Given the fast calculation time and the accuracy obtained in this longitudinal study, the technique seems to be mature enough to follow longitudinal variations in normal subjects. It now deserves to be deployed in clinical trials aiming at quantifying the muscle mass to see if similar performances could be obtained in patients with more severe muscle mass changes.

  Reference: 1. B. Gilles, N. Magnenat-Thalmann / Medical Image Analysis 14 (2010) 291-302 2. Benjamin Gilles and Dinesh K. Pai, MICCAI 2008). 3.Mazaheri Y et al. Semi-automatic deformable registration of prostate MR images to pathological slices. J Magn Reson Imaging 2010;32: 1149-1157. 4. Zijdenbos AP, et al. Morphometric analysis of white matter lesions in MR images: method and validation. IEEE Trans Med Imaging 1994;13:716-724.

  Fig1.

Figure 2 (

 2 Figure 2 (right): Manual reference segmentation of the quadriceps muscle. Automatic estimation of head boundaries using a) In-phase, b) Out-phase, c) Water, d) Fat and e) the fused image obtained using all contrast channels. The best results were obtained when using the Water calculated images.

  Fig2.