=Paper=
{{Paper
|id=None
|storemode=property
|title=Needs, requirements and e-services for collaborative and patient-centered care
|pdfUrl=https://ceur-ws.org/Vol-963/paper7.pdf
|volume=Vol-963
}}
==Needs, requirements and e-services for collaborative and patient-centered care==
https://ceur-ws.org/Vol-963/paper7.pdf
Needs, Requirements and e-Services for Collaborative
and Patient-Centered Care
Monica Winge, Benkt Wangler
1
Department of Computer and Systems Sciences, Stockholm University, SE 114 18,
Stockholm, Sweden
{monica.winge, benktw}@gmail.com
Abstract. This paper discusses the fact that more and more patients are treated
in their homes by a whole set of organizations, and how this fact places new
and more intense demands on health and social care staff to communicate and
collaborate. The aim of the paper is to further explore the detailed needs for
collaboration between different care units, individuals and professions, and to
outline organizational and/or IT-based solutions. The suggested solutions are
based on a patient and process oriented perspective and on an analysis of needs
and issues expressed in interviews with key actors in a number of research
projects focused on collaboration in care. We point to the need for managers in
different organizations to agree on ways of communicating and collaborating on
the operational level over sectors and units and how this aspect has to be taken
into account already during procurement of care services. Most importantly, by
reasoning from a basic set of issues, we derive a set of related problems and
suggest solutions for how to deal with these. The solutions include suggestions
for various e-services aimed at improving coordination and collaboration
among care personnel.
Keywords: Multi-sectorial collaboration, home care, home health care, social
care
1 Introduction
Health care in Sweden is currently in a phase of immense change. One important
change concerns the fact that more and more patients are treated and taken care of in
their own homes instead of in hospitals or nursing homes. This may also concern
severely ill patients, for whom several different professions from health and social
care may be involved in the care process. In order for the patient to get good total
care, this poses essential demands on collaboration and coordination among the
involved caregivers. Intense collaboration among several parties requires well
functioning information logistic to supply the information necessary to perform the
various tasks involved. The situation gets more complicated by the fact that the many
different professions involved belong to different organizational units each of which
may be a private or public organization, owned by county councils or municipalities.
Bridges need to be built between care personnel belonging to different professions
and units.
In a previous paper [1], we accounted for an investigation in two Swedish
communities, Stockholm and Umeå. The results indicated that there were problems in
inter-organizational communication and cooperation in health and social care. Most of
these problems were due to organizational and social obstacles that resulted in lack of
communication among the various units and individuals involved. In five subsequent
papers [2-6] we have analyzed the requirements this situation poses on collaboration
and coordination. The findings stress the need for improved collaboration among
managers on strategic and tactical levels, and among staff at the operational level, in
order to facilitate and ensure a high-quality care for the patient. In particular,
managers from different organizations need to collaborate more effectively in order to
set up goals and routines for collaboration at the operational level. In addition, results
showed that collaboration also has to be considered during procurement of health care
and social care and that managers need means to follow-up the quality of delivered
services. The need for substantially enhanced e-services to support coordination and
collaboration was also evident.
The aim of this paper is to further explore the needs for collaboration between
different health and social care units and professions, and to outline e-service
solutions that will instigate a process oriented knowledge supply focusing more on
processes closer to the patient than on general organizational structures and processes.
This involves:
• understanding, holistically, the forces influencing how collaborative care
processes could and should work;
• identifying the need for new ways of communicating and for mobile and
immediate access to information concerning both medical and administrative
information;
• understanding the need among operational care staff for clearly allocating and
accepting the responsibility to explicitly communicate and collaborate in the
patient’s care process;
• suggesting changes in information support, particularly of information related to
the planning and administration of care activities. The support has to be mobile
since many care professionals are moving to and from the patients’ homes. It also
has to be based on process centered information models that support
collaboration.
In the following we define how we use certain terms in this paper. Although
admittedly a bit vague, the definitions will hopefully help to make the paper easier to
understand.
• Home health care is an orginazational concept, which involves
o basic health care – provided by nurses and/ or nurse auxiliaries, in Sweden
usually the responsibility of municipalities, although sometimes outsourced to
primary care units run by the county councils.
o advanced health care – operated by the county councils and provided by
teams of doctors, nurses and other staff. This care often concerns severely ill
children or patients in palliative care.
• Social care is personal care that involves help with activities of daily living, such
as cleaning, shopping, feeding etc, and care that physically supports the patient,
such as help with outdoor activities or personal hygiene. In Sweden this is the
responsibility of the municipalities and may be provided by one of their own
units, or by a contracted private company.
• Home care as used in the title of this paper denotes the combination of home
health and social care.
• Patient care process is the sequence of activities carried out for the patient by
health care or social care personnel from various organizations and in which the
patient and often his relatives or friends participate. The process can be seen as a
project, the aim of which is to produce better quality of life for the patient, while
at the same time maintaining patient safety. Each activity in the “project” should
contribute to this value creation. Technically, a virtual project team could be set
up to run a certain number of similar “projects”.
• Collaborative (home) care, which denotes a setup of collaborative care services
performed by a set of care providing units. In particular, it concerns the
cooperation of home health care with primary care, hospital care and social care.
On a generic level the concept can be considered to include any setup of
cooperative health and social care.
The paper refers where specific circumstances are considered, mainly to Sweden.
However, we do believe that many if not most conclusions are valid for large portions
of the western world.
We use the term cooperation to denote co-work on the organizational level and
collaboration to denote individuals working together. For simplicity, we use, where
needed, “he” and “his” to refer to the patient, although he may be of either sex.
The paper is structured in the following way: The next section provides an account
of collaborative care as a whole and some related research and point to the demands
for communication and collaboration among and between different managerial and
operational levels. After that we briefly account for the research projects and the
methodological approach taken in our research. Section 4 describes the research
findings, i.e. it contains an analysis and discussion of issues related to collaborative
care, their causes and consequences and what to do about them. Section 5 discusses
IT support and proposes a set of e-services aimed at facilitating collaboration. The last
section provides a few concluding remarks.
2 Collaborative Health and Social care
Two or more parties collaborate when they work together in order to achieve a
common goal, i.e. perform a task that each one cannot cope with alone or at least not
as well or to as low a cost. This implies that all parties must understand the mutual
goal and the basic circumstances, demands and restrictions that the other party faces.
Each party must also be clear over how the work tasks are split up (or divided) and
how ones own work tasks contribute to the common goal.
Thus, collaboration between organizations is a complex matter and may, for a
single patient, involve a set of entangled processes each run by a separate care unit.
Existing research has focused on a wide variety of aspects. In research concerning
collaboration within health care, van Eyk and Baum [7] have studied what they name
as interagency collaboration. Hudson [8] has studied joint commissioning across the
primary health care-social care boundary in the UK. El-Ansari et al. [9] have focused
on public health nurses’ perspectives on collaborative partnerships in South Africa.
El-Ansari et al. [10] investigated collaboration and partnership and the problems with
measuring collaborative outcome. Lichtenstein et al. [11] have studied the effect
status difference has on individual members in cross-functional teams. Mash et al.
[12] have studied team learning in healthcare that sees the organisation as a living
system in which information flow, participation and the development of team work
are key aspects. If managers of the health system wish to enhance organisational
change, then their goal may need to shift from optimizing health care delivery from a
mechanistic model view to optimizing health care workers in a living system.
It is also possible to find some examples in the field of mobile work and
information processing. In the health care area, Ammenwerth at al. [13] explore how
mobile artifacts can be used for information processing in a hospital. Pascoe [14]
describe how mobile artifacts increase the amount and speed of data being recorded
out on the field; Najjar et al. [15] describe how wearable computers might increase
the performance of quality assurance inspectors. Guerlain et al. [16] write about
personal information systems for roving industrial field operators and Heath and Luff
[17] examine the ways in which mobility is critical for collaborative work.
Each of the stakeholders involved in caring for a patient has its own obligations
that need to be taken into account in order to reach a reasonable compromise that
meets most requirements at the same time as it focuses on the best interest of the
patient. When several parties collaborate it is often difficult to formulate one single
objective, since each organization has its own goals. It is, however, important that all
involved are aware of the overall purpose of the work around an individual patient
and make sure that this is in accordance with their own and with the patient’s goals. A
simple example of collaboration is a doctor in primary care who needs to consult a
specialist in a hospital. A more complex case is when a patient’s problem and its
treatment require many units and individuals to be involved. An even more
complicated case arises when several care units and professions are involved and
where the patient suffers from several diseases. This kind of case is not uncommon
e.g. in palliative care. It will result in a conglomeration of more or less interdependent
processes, each run by a separate unit, becoming entangled with each other.
For collaboration to work successfully (cf. computer-supported collaborative
work), the parties may have to communicate
- over a distance, i.e. the communicating parties are at different locations and
have to use some kind of tool to bridge that distance, or
- over time, i.e a place (a database) is needed, where information can be stored
at one occasion and picked up and read at a later time.
Collaboration may take place both at a top (strategic) and a middle (tactical)
management level, and at the operational level, as well as between different levels.
These levels exist within all health and social care organizations. Thus, there are
several organizations and organizational levels, each one responsible for its part of the
total care provided for the patient.
3 Methods and Materials
Arguments put forward in this paper are grounded in focus groups, interviews, and
studies of documentation conducted in the projects Intercare [18] SAMS [19, 20],
MobiSams [21], VVP [22], and LARC [23], in which the authors have been involved.
The results are also supported by research conducted in the project VITA Nova [24].
All studies have focused on collaboration within and between health and social care
organizations.
The overall aim of these projects were to study care processes and the needs for
information exchange, as well as the needs for organizational reengineering at the
operational level and especially in clinical routines, all from a patient and a
collaborative perspective. Information collection was carried out on fairly small
populations of patients and professionals (including managers) in health and social
care. A common point for all these case studies was that representatives from several
care providing organizations were involved.
Interviews were carried out within the last three of the 5 projects. Interview
respondents were selected to reflect a representative amount of stakeholders in
various positions. All had long experience of health care or social care (from their
different perspectives). Their experience regarding IT and its use varied. The
respondents were doctors from primary and specialist care, primary care nurses,
specialist nurses, assistance assessors, IT strategists, managers, patients, relatives and
representatives of patient organizations. In total more than 50 semi-structured
interviews, each lasting between one and two hours were conducted within the
projects. All interviews were recorded, some were transcribed verbatim, and some
were summarized in interview protocols after going through the recorded interviews
several times. A content analysis was used on interviews and documents identifying
issues raised in relation to collaboration.
Focus group studies were mainly conducted within the first three of the 5 above-
mentioned projects. The focus groups included representatives from health and social
care staff in municipalities, counties and private care providers. The focus group were
interdisciplinary, with participants such as doctors, nurses, occupational therapists,
physiotherapists, and psychologists. Participants were predominantly from operational
units, but there were also representatives from management and from the IT industry.
The latter were there to share knowledge about new ways to use ICT.
The groups worked interactively and met regularly during the project to produce
lists of requirements and scenarios focusing on patient needs, and use cases and other
models together with modelling facilitators.
4 Issues and Requirements
In this section we will take a closer look at the problems of collaboration in home
health and social care, their causes and effects. There is not so much research dealing
specifically with these issues. Except the previously mentioned works by Winge et al.
[1-6], one example is however, [25], where Åhlfeldt, based on a set of interviews with
health care staff and patients, derive a set of problems related to information security
in connection with collaborative care. It turns out that most of these problems were
connected to administrative routines and policies and not to technology. In [26],
Åhlfeldt and Söderström discuss the need for coordination of home care activities and
propose a possible solution for this. On a more general level one well-known
organizational problem, as organizations grow, concern specialization and integration
[27]. Health care is by its nature also subject to medical specialization, which in turn
places special emphasis on the need to coordinate units, groups and professions.
Horizontal organizational coordination is, among other areas, addressed in attempts to
improve the logistics of health care (for example national projects in Swedish
healthcare to improve availability and shorten waiting times), while vertical
coordination is a common problem concerning for instance control and feedback
systems of work environment, quality and economy. A general discussion of
horizontal and vertical integration of enterprise systems can be found in [28].
As indicated in Figure 1, we will present a set of underlying problems based on an
analysis of the empirical material. These issues contribute to the lack of collaboration
between care providers, the poor utilization of resources and the substandard quality
in health and social care. We will suggest solutions and improvements to help
avoiding the effects of each particular situation.
Fig. 1. Basic causes to lack of collaboration in collaborative care and their effects.
What is offered to patients by a diverse set of care providers is a collection of
services intending in various ways to improve the patient’s quality of life, at best to a
degree that the patient will not need more care. In the sequel we will discuss in some
detail the shortcomings indicated in Fig 1, and how they affect collaboration.
Statements in italics are derived from interviews mentioned in Section 3. The
solutions we suggest include a variety of e-services that together with rules and
guidelines suggest how these services should be undertaken.
4.1 Governance, Leadership and Management Issues
Sweden is divided into 20 counties, each with a county council to hold the highest
responsibility for the tasks allocated to them. Among responsibilities allocated to this
level is to provide citizens with health care in the form of primary care units and
hospitals. These may be owned and run by the councils themselves or they may be
outsorced to private companies.
Social care on the other hand is the responsibility of the 290 Swedish
municipalities. Also in this case, care may be outsourced or run by the municipalities
themselves.
There are a number of laws governing how care has to and should be conducted,
such as the Health and Medical Services Act, the Social Services Act, the Secrecy
Act, the Personal Data Act, and others.
In conclusion, there are a great number of factors that affect each other and that
may result in less than optimal care quality and a waste of resources. Plausibly, many
more issues than those accounted for below exist, but these are the ones derived from
our investigation.
As pointed out in Figure 1, one of the most important reasons for deficiencies in
collaboration is the (1) lack of or inconsistency in regulation on all levels of
governance. In addition to discrepancy among laws governing health and social care
there is also on the local level a lack of clear routines and guidelines for how to
communicate and collaborate among all those involved in caring for the patient.
Futhermore, the compensation systems are inadequate in that they do not properly
reward collaboration, which in turn causes a lack of motivation to do so. The remedy
for these shortcomings is obviously to try to minimize inconsistency among laws
regulating care, at least clarify how to deal with it, to prepare clear instructions for
how to collaborate, to provide proper tools and other means to help communicate, and
to construct compensation systems that somehow reward collaboration.
Another important reason is (2) vague and ambiguous management. If managers
do not succeed in explaining how the collaboration is intended to work, why and
which specific collaboration actions that need to be taken, the operational staff will
not be motivated to perform these activities. Lack of motivation may lead to less
encouragement and will to contribute to the collaboration.
If managers do not understand what is required when it comes to coordination and
collaboration, there will be a poor general understanding of what actions
collaboration requires and as a consequence these actions will not be undertaken.
In conclusion, the managers need to:
- clarify to themselves and others what the organizational mission as a whole
involves when it comes to collaborative health and social care,
- explain what is required and why,
- give precise instructions and
- provide convincing explanations to why certain coordination and collaboration
activities are necessary and how they should be conducted.
As a result operational care personnel will be better prepared and motivated to
carry out their work.
Collaboration between county council and municipality should take the situation of
the patient as the starting point and a common plan for the care of the patient must be
produced with safe and high quality care in focus. It should also enable follow-ups of
the results of the care both on an individual and a general level. Moreover, the goals
of the individual patient process have to be explicitly formulated and based on the
needs of the patient. The staff has to be trained in thinking on the goals of the process.
Describing and clarifying the strategy for collaborative care on the basis of a common
health care and home services process will clarify responsibility, facilitate planning
and collaboration, and make it possible to monitor the care across organizational
borders. The clarification of the collaborative care concept must involve management
levels and staff where old routines and habits can be difficult to change. Procurement
of health and social care has also to include requirements for collaboration.
There is a need for a new and better system for economic compensation for
collaboration. Furthermore, responsibility has to be clearly distributed among actors
and everyone to have basic knowledge of who is doing what. There also has to be ICT
services that support the patient process and the interaction of the caring staff. The
staff may be motivated through participating in planning of the individual patient
process. Doing so they can understand how their own work contributes to better
collaboration and better results that meet the patient’s needs. Organizational
responsibility has to be clarified, also concerning manager decisions. Political and
strategic leaders have to recognize this and provide means for collaboration.
4.2 Information and e-Service Related Issues
A basic shortcoming in collaborative care is that (3) the underlying care model is
unclear and that involved managers have little knowledge and understanding of the
way collaboration has to work in order to produce good quality for the patient.
Obscurity in the patient process leads to obscurity in how collaborative care, as a
whole needs to work to be both effective and efficient. It also leads to a poor
understanding of how collaboration should work and of what characterizes the
collaborative care itself on behalf of the health and social care staff as well as the
patient and next of kin. This issue concerns the fact that it is not clearly expressed, in
each individual case, what the various units do and how they should take each other
into account in order to achieve high quality for the patient. It may also include a lack
of understanding of the role and responsibility of a unit for “advanced home health
care” in relation to hospitals, primary care and other units. The patient himself and his
relatives may, for instance, feel that the patient has been sent home and left
abandoned, while the accurate process will be hampered due to lack of cooperation,
caused by a poorly defined care model stating both that high-quality health care may
be provided and that resources are available.
To provide field workers with correct and timely information about what is going
on around the patient and with tools to communicate with others is crucial for them to
be able to plan their work and to perform the various care actions that have been
allocated to them in the best possible manner.
In this context (4) lack of clarity in terminology contributes to making
collaborative care as a whole ambiguous. If concepts are vague or ambiguous you
cannot express information requirements clearly. From this follows the risk that
information systems will not provide the information needed for coordination and
collaboration. The ability to provide the right information when needed, presented it
in a way that is understandable also for those who have a different conceptual view of
the world, requires well understood concepts.
Different units and professions offer different competencies, have different tasks
and see different aspects of the patient. Concepts that are not well-defined and hence
not well understood make communication less effective, which in turn contributes to
making coordination and collaboration more difficult.
Unclear or ambiguous concepts lead to a lack of understanding for parts of the
whole care proposition and hence to a bad understanding of what information that is
needed also concerning collaboration. Ambiguous notions in medical records also
offer risks for the patient.
The common information needs must be identified and defined in a common
generic information model for future IT systems. The concepts have to be identified
on the basis of the generic patient care process. Collaboration has to take place with
the patient and his needs in focus and be described on the basis of cooperation
involving care and collaboration strategies (which are lacking in today’s care). The
collaborative care model must define how care should be carried out. The distribution
of responsibility must be clearly described. Concepts that are involved in the process
should be defined in an information model. All of this should be set in a relevant
context. For collaboration to work, it is particularly important to define concepts that
are important for communication between various kinds of care units.
Care staff in a particular unit may have little knowledge of, or in some cases are
not interested in, what actors in other units do to the patient. Such awareness is,
however, important as a basis for developing effective and quality oriented
collaboration. A joint care plan for each patient has to be defined and developed by
somehow involving representatives of care staff from each care unit and hence
making them understand how activities carried out by different actors contribute, in a
coherent set of tasks, to reach the goals of the treatment of the patient. Information
support for care personnel will also contribute to a better understanding of which
actions that will lead to particular goals. There is also a need for better coordination
of the individual patient process. New e-services for care planning can support this
function, which should be a common responsibly of the virtual team, although a
single professional may be appointed as “process leader”. The e-services must include
support for quick changes in the patient’s care plan.
If information is poorly understood or incorrect, actors in different units will not
understand the information that may arrive from other units. Such information will
not lead to activities that are coordinated with the goals of the overall situation of the
patient. The concepts and the common frames of reference will have to be clarified
for different actors in different units that have to communicate.
If goals for the individual patient process have not been clearly formulated it is
difficult to coherently provide activities from several care units for the best of the
patient. There will be no basic ground for adapting and understanding information
concerning what other units do to reach the goals of the patient process. Different care
providers do not strive towards the same goal concerning a patient in a particular
situation.
A set of goals should be formulated for each single patient process when new
essential needs of the patient have occurred. The care provider’s responsibility for
achieving the goals should be clearly stated. One new instrument for this is to use a
well-developed care plan that all cooperating units can access and to which
coordination support is connected. The patient and/or his relatives must be involved in
formulating the goals.
One of the reasons for experiencing bad collaboration is that various care staff
does not know what others are doing or planning. Activities are therefore not
coordinated, which may result in lack of quality and that resources are used in a less
optimal way. In some cases there may also be risks for the patient.
Information services have to be developed to inform actors of other units what is
relevant for them to know about the patient and about planned and performed
activities. This should be based on clarified goals and roles as defined in the new care
model. Based on a well functioning care plan, actions can be coordinated so that work
distribution will become more optimal.
Lack of interest among those involved about what others are doing contribute to
lack of team-oriented work and hence to lack of collaboration.
Everyone involved should be informed about what the other parties and
professions do and of their role in the patient process. The expectations and demands
from the organization on its members own responsibility to seek out this information
should be clarified.
Collaboration across organizational borders is a prerequisite for good teamwork
involving various professions as well as the patient and his relatives or friends.
Lack of collaboration easily leads to lack of care quality for the patient. This may
result in the patient feeling unsafe and various actors being uninformed about the
patient’s condition. At worst, the patient’s health may be at risk.
Lack of collaboration and agreement on the management level concerning what is
required when it comes to collaboration at the operational level may lead to
procurement of care (request for quotation and ordering of care services) that does not
take the collaboration aspect into account.
Lack of collaboration leads easily to bad utilization of resources, e.g. that the same
activity is carried out several times or in a less than optimal order.
If care team members are trained in reading documentation originating from other
units (provided that patient privacy allows it) and if there is information support for
this, different actors can see patterns and signs at an early stage. This can lead to more
timely actions meeting new needs of the patient and to a better anticipation of
problems. Collaboration supported by good IT solutions will increase safety for the
patient and make him less prone to take unnecessary contacts with the care team. It
will also facilitate a good utilization of resources. Managers must agree that
requirements for collaboration must be taken into account already during procurement
of care services. Routines for measuring and following up the care should be
implemented on the basis of evidence based competency such as to be able to judge
how care ought to have been conducted had one realized early on what was
happening.
To bring about collaboration in care is demanding. Everyone involved need to have
a basic understanding of the complete care situation and perform different tasks in an
order that accounts for an established collaboration and coordination. If procurement
is not done the right way, the result, among other things, will lead to a bad utilization
of resources.
Requirements for collaboration and coordination must be taken into account during
procurement of care services. This includes clear descriptions of what services are
needed to support collaboration for all involved. To achieve this, the health care
procurement units have to be trained in the new care model and how collaboration
should work. New strategies for following up care are needed, in particular
concerning how collaboration works.
The suggested solutions will address and contribute to improving both vertical and
horizontal coordination, within as well as between organizations. In the next section
we will outline the most important e-services that need to be provided.
5 Towards an Information and e-Services Architecture
To summarize, the issues pointed out in Section 4 suggest that improvements are
needed among all involved parties both on the management levels and at the
operational level. The conclusions and suggested actions are a mix of development of
care and collaboration concepts, various organizational measures, and IT support.
Most importantly a new strategy and a new care model for collaborative health and
social care as a whole needs to be established, which involves:
• the need for managers in involved organizations to work out and agree on goals,
rules and routines for collaboration on all levels,
• the need to include requirements for collaboration already in the care
procurement process,
• the need to recognize the importance of coordination among care givers and care
activities along the care process,
• the need to have clear goals for every single patient process and of which the
care givers must be aware.
• the need to make clear how care results will be described, what kind of results
that need to be followed up, and how this should be done.
Participants in the focus groups that were mentioned in Section 3 identified a
number of functional requirements. In particular, demands were made for the
following information to be made available in a mobile setting and to anyone
concerned who has the right authority:
• A list of planned care contacts, i.e. patients that need to be visited.
• Goals and objectives for the care of the patient,
• Diagnoses and planned treatments for the patient,
• Planned actions for a patient,
• Which other care personnel will visit the patient according to plan,
• The visits and care actions that are planned for other actors in the team,
• Contact information for patients and families,
• Instructions and guidelines for the conduct of health and social care actions,
Care personnel should, depending on authority be able to:
• Document that a planned action has been or has not been performed,
• Create and plan a new care action,
• Change of time and order for scheduled care actions.
The patient and involved relatives or friends should be able to:
• View the patients schedule for a day,
• Make own notes of care actions and patient status.
• View care giver contact information.
With reference to the well known (cf. CSCW) 2 by 2 time/place groupware matrix
[29], it turns out that all of these services fall into the different time/different location
category.
In Section 4 we have pointed to the requirement of making the various actors
come to a reasonable agreement on common concepts and terminology. Unclear or
ambiguous concepts are a problem in the whole health care sector. Here, like in other
parts of society it is not rare that even the most central terms are understood
differently among different stakeholders. We believe that to a certain extent this is
something one has to accept and learn to live with, but at least we need to be aware of
it. In the context discussed in this paper it is, however, desirable to agree at least on
terms and concepts that concern collaboration. The models, primarily information
models that have been developed in the projects InterCare [18], Sams [19, 20] and
MobiSams [21] are important contributions to getting to grips with this issue. These
models build on a process that describes important information exchanges around the
patient regardless of which organization that is responsible for the information.
These projects have also resulted in explicit knowledge on how improved and
patient-centered collaboration among care providers can be accomplished. The
improvements partly build on an enhanced way of working and partly on a utilization
of IT support that aims at facilitating and enforcing collaboration. The new ways of
working should be described in process and conceptual models, which will also
function as the basis for building the IT support. The MobiSams project also had the
intention to clarify the patient process, i.e. on one hand how it functions today and
how the patient experiences it, but also how it would appear if the suggested new
ways of working and the IT tools be available.
The process is started when a patient has “qualified” for it, e.g. by having achieved
a certain age, and/or by having need for complex and extensive care. In this context, it
is important to define and to understand what the care process looks like for each
category of patients and how it distinguishes from a standard process. Gurner and
Thorslund describe in [30] how the lack of cooperation leads to elderly getting
inadequate care. They call for a ”coordinator”, i.e. someone being like a “project
manager”. The “coordinator” will have the overall responsibility for the patient’s care
planning. Together with the patient and with representatives of all involved units, the
coordinator plans and decides which improvements and objectives that should be
achieved and which initiatives that will be introduced and who will carry them out.
From expressed requirements and needs we can derive which services that are
needed to support collaboration and coordination. Some of these services may be
implemented as e-services using e.g. web service technology.
The IT support developed in Sams and MobiSams comprises a set of e-services
that are well defined and built for communication to support coordination and
teamwork. They are able to exchange information in a structured way.
Fig 2 shows an example of user interfaces adapted for a PDA device. The user logs
in, is authenticated, and then looks for what actions are planned for the patient the
user intends to visit. Information is provided for all diagnoses, the goals, and the
actions other caregivers plan to conduct.
When care actions have been performed, these actions can then be ticked off
documented and presented as performed in the common care documentation in real-
time.
Fig. 2. Sample e-services from the MobiSams project for collaboration in home care.
Examples of Common Information eServices.
Services for planning care. For each individual patient, it is important to provide e-
services for care planning. Since we focus on the interaction between stakeholders
such as health-care staff and patients and family members. The plan has to be
organization-wide. It should outline the common goals and objectives, go through the
patients’ needs and problems, etc., and define the care actions suggested by each
participating unit. The plan describes the joint commitment of the parties involved
since individual care actions could also be related to the overall care objectives. The
service can also be used to establish local and detailed plans.
Services for performing care activities. For each person responsible for carrying out a
care action it should be possible to document the outcome of that action. In doing so,
the overall care plan may have to be updated and changed. In the continuing care
process, all local and specific plans and actions need to be in accordance with the
goals in the common care plan.
Services for following-up results. It is important to follow up a patient's goals and
objectives in relation to the health and social care actions carried out. An important
element is that the information is consistent and in accordance with the common
information structure.
The services presently available concern:
1. Planning and coordination of all work tasks along the individual care process as
a whole. This includes formulation of mutual goals and objectives for all
involved organizations and professions, and at the same time focusing on the
best interest of the patient.
2. Definition of activities planned for each unit, in accordance with the agreed
goals.
3. Allocation of tasks and resources for the planned activities. Assignment of
personal responsibility for achieving goals and objectives for each task.
Determination of how goal fulfillment should be measured.
4. Planning and registration of the result of the care activities.
5. Registration of undertaken care activities in such a way that goal fulfillment can
be assessed.
6. Conducting follow up and evaluation of the care process from the individual’s
point of view.
The Sams and MobiSams projects have implemented these tools in a common test-
bed where they were tested in real environments using novel ICT techniques, i.e.
stationary as well as mobile and handheld devices. Tests were specified from use
cases developed by care staff. The project and test-bed were set up to work such as to
facilitate learning while developing collaborative care as (a virtual) enterprise,
including the ways of utilizing IT. Organizations and individuals that possess
knowledge about adequate platforms, architectures, network and mobility techniques
that are suitable for making the applications useful in the care process have been
participating in the work with the test-bed.
6 Concluding Remarks
In this paper we have discussed the fact that more and more patients are treated in
their homes by a whole set of people from different organizations and how this new
situation places new and complex demands on the communication and collaboration
among health and social care staff. We have further pointed to the need for
communication and collaboration on different organizational levels, i.e. both
managerial and operational levels. In particular we have pointed out the need for
managers in different organizations to agree on ways of communicating and
collaborating on the operational level and how the need for collaboration and
coordination must be taken into account already during procurement of home care
services. In [4] we provide more detail on this discussion. Most importantly we have
in this paper, by reasoning from a basic set of problems, derived a set of related issues
and suggested some solutions for how to deal with these. The suggested solutions are
a mix of organizational and administrative measures, and development of e-services
for communication and coordination, even though more specific aspects will be
needed concerning the process of organizational change and how to deal with specific
organizational obstacles.
The intention of collaborative care is to employ a holistic view of the health and
social care given to a patient, so that the patient perceives no boundaries between
different care giving units. Collaborative care comprises a coherent set of activities
aimed at meeting the needs of a group of patients, and in each case also adapted to the
individual patient. Structured collaboration between units providing care is a
prerequisite. Collaborative care is aimed at improving the existing procedures,
routines and rules for communicating and coordinating activities; in order to achieve
better collaboration among all involved actors. It is based on a clearly stated care
strategy, on an overall and on an individual level.
For every individual patient, a care plan should be laid out with clearly formulated
goals. Ideally, the goals should be connected to a plan of actions. This plan should
also consider the effects on staff’s working environment and the effects of chosen
actions on the unit’s economy, including an estimation of the cost of poor quality. The
responsibility for coordination and collaboration should be identified and clearly
distributed among the different actors that take part in planning and performing care
activities. One of the largest problems is how to clarify the tasks, and identify how
different units, individuals and types of competences can work collaboratively.
Clarifying and explaining the notion of collaborative care for staff, patients and their
relatives/friends is therefore imperative.
Finally, it is very important to stress the need for a new collaborative care model
defined with the patient in focus and for health and social care as a whole and not
only for IT.
Acknowledgements. The authors wish to thank the European Commission, the
Knowledge Foundation and Vinnova for funding the projects Intercare, SAMS,
MobiSams, VVP, LARC, and VITA Nova. Thanks also to the participating
organizations and individuals in these projects and in particular to Lars-Åke
Johansson, Monica Nyström and Eva Lindh-Waterworth.
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