CO-CARE - Collaborative Health and Social Care

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CO-CARE - Collaborative Health and Social Care Monica Winge1 , Benkt Wangler2, Lars-Åke Johansson3, Monica Nyström1, Eva Lindh-Waterworth4 1

Karolinska institute, Stockholm, Sweden. [email protected]

2

University of Skövde, Skövde Sweden. [email protected]

3

Alkit communications, Gothenburg, Sweden. [email protected]

4

Umeå University, Umeå, Sweden, [email protected]

Abstract. In this paper we discuss the fact that more and more patients are treated in their homes by a set of organizations, sometimes with different ownership. We explore how this poses new and stronger demands on health care and home service staff, as well as on different managerial and operational levels, to improve their communication and collaboration. We emphasize the need for managers in different organizations to agree on ways and forms of communication and collaboration between the operational levels, and the particular importance of this during procurement of home care services. As a result a number of methodological measures, strategies and IT solutions to support organizational development, coordination and collaboration are suggested. Keywords. Collaboration, home health care, social care, IT support, management.

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Introduction

Health care in Sweden and much of the western world is currently in a phase of great change. One important transformation is that more and more patients are cared and treated in their own homes instead of in hospitals. This may also concern the care process of severely ill patients, for whom several professions from health and social care are involved. In order for the patient to get good total care, this poses essential demands on collaboration, cooperation and coordination among the involved care providers. The situation is complicated by the fact that different actors span a wide spectrum of competences and educational levels. They may have different frames of reference for communication, since they belong to different professions and often to different organizations and units, sometimes with different ownership, for instance private, county councils or municipalities. In a previous paper [1], we accounted for an investigation among two Swedish communities, Stockholm and Umeå. The results indicated that there are problems in inter-organizational communication and cooperation in home health and social care. Most of these problems are due to organizational and social obstacles that result in lack of communication among the various units and individuals involved. In three subsequent papers [2, 3, 4] 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 aim of this paper is to further explore the detailed needs for collaboration between different health care and home service units and professions, and to outline organizational and/or IT-based solutions, based on a patient and process oriented perspective. This involves: • • • •

understanding, holistically, the forces influencing how a collaborative care processes should work; identifying the need for new ways of communicating; understanding the need for allocating and accepting different types of responsibility in the patient’s care process; suggesting changes in information support, including medical records and information related to 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.

Arguments are grounded in previous research and development in which the authors have been involved [5, 6, 7, 8, 9]. This background is complemented by long experience with organizational and IT development in various operational and management functions within hospitals, primary care and in home health care. In the following we define how we use certain terms in this paper. •

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Home health care involve: o basic health care – provided by nurses and/ or nurse auxiliaries, in Sweden usually the responsibility of municipalities or outsourced to primary care units run by the county councils. o advanced health care – operated by the county councils and lead by doctors 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 support 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. Patient care process is the sequence of patient treatments and other activities, performed by health care or social care personnel and in which the patient and often his relatives/friends participate. It is important to understand that the focus should be on the process as creating a higher quality of life for the patient, and that each activity in the process should contribute to this value creation.

To these ‘definitions’ we would like to add collaborative care, or CO-CARE for short, to denote a setup of collaborative care services performed by a set of care providing units. In particular, it concerns the cooperation of home health care and services within primary care and hospital care. On a generic level the concept can be considered to include any setup of cooperative health and social care. The intention of CO-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. CO-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. CO-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 overall and on individual level. For every single patient, a care plan should be laid out with clearly formulated goals. Ideally, the goals should be connected to plans for actions. These plans 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 CO-CARE for staff, patients and their relatives/friends is therefore important. The paper refers, where specific circumstances are considered, mainly to Sweden. It is structured as follows: The next section discusses briefly the notion of collaboration and the various forces influencing collaboration. In Section 3 we deal with the need for communication and collaboration on different managerial and operational levels. In Section 4, a discussion of the methodological, organizational, and informational support that will be needed to support collaboration in CO-CARE, is

added. Finally, in Section 5, a few concluding remarks are given. For simplicity, we use “he” and “his” to refer to the patient, although they may be of either sex.

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Collaborative health and social care

A patient receiving health care at home usually has the perception that the set of people from different care providing organizations all work together as a team. However, these “teams” are seldom formally set up, but appear as a result of different organizations and individuals taking on different duties around the patient. The various actors often have limited knowledge of which other organizations, individuals and professions that are involved in a particular patient’s care. They may occasionally meet in the patient’s home and acquire knowledge of each other’s existence and roles. Thus, there is usually very limited organized collaboration. This makes it difficult to arrange an effective collaborative care that focuses on the patient’s needs and well-being. When two or more parties collaborate they work together in order to achieve a mutual goal, i.e. perform a task that each one cannot achieve alone, or at least not as well, or at as low a cost. This implies that all actors in each case have to reach a common goal through a consensus creating process. Usually a synchronous communication session is needed. Each party has to understand the basic circumstances, demands, and restrictions that the others face. For each patient group, the sub process can be supported by a typical care program that requires the different parties to be clear about how the work procedures and tasks are distributed and coordinated in time. This care program can then be adapted to the individual patient and the needs and goals defined in each case. Collaboration between organizations is a complex matter. Existing research has focused on a wide variety of competing aspects. In research concerning collaboration within health care, Baum and van Eyk [10] studied what they name as interagency collaboration. Hudson [11] has studied joint commissioning across the primary health care-social care boundary in the UK. El-Ansari et al. [12] have focused on public health nurses’ perspectives on collaborative partnerships in South Africa. ElAnsari et al. [13] investigated collaboration and partnership and the problems with measuring collaborative outcome. Lichtenstein et al. [14] studied the effect status difference has on individual members in cross-functional teams. Åhlfeldt and Söderström stress the need for coordination in crossborder health care planning [15]. However, few of these studies have focused on mobile health care at home and its specific needs. The likely future scenario is that a substantial part of the Swedish health and social care will continue to be financed by public sources, and that these resources have to be used in a more patient centred, effective and result-oriented ways. As a consequence, the organisational structures will remain complex and comprise both health and social care organisations, collaborating more or less in a common environment [16]. Demiris et al also emphasize that health and social care services will become more patient centred. [17] In consequence, to achieve a safe, efficient and high quality health and social care system, it must be based on an effective collaboration among health and social care personnel, the patient and his relatives/friends. This is especially important due to the risk accompanying the division of responsibility and the complexity caring for patients with multiple health problems. When responsibility is ambiguous serious problems have been noticed, especially when patients are transferred from one organisation to another [18]. Graaf et al [19], have shown that healthcare in Sweden generally does not implement interactive discharge planning when moving patients from hospitals to home healthcare, due to a deficiency in collaboration and in the non-accurate way available information is structured. Modern information and communication technology enables access to an information structure. If it is used in the correct way, it can also contribute to an increase in patient safety. Koppel has shown [20] that lack of information structure in the IT systems can lead to incorrect medicine prescriptions, indicating that hand typed prescriptions are safer than digital prescriptions. It is therefore most important to provide a correct information structure, since safety issues are an important aspect for the patient’s feeling of security. Figure 1 depicts some of the forces and stakeholders that influence how collaborative care should work, and hence how the CO-CARE concept ought to be designed. Each of these stakeholders has their own needs and requirements. When necessary one has to arrive at a reasonable compromise that meet most stakeholders’ requirements while it also focuses on the patient’s best interests. The

different stakeholders affect and to some extent limit the actions of each other. All their claims cannot be fulfilled when handling the common requests for collaborations, focusing on patient needs, i.e. CO-CARE.

Organizations, economy, reqs for follow-up, laws and regulations

Health and social care staff

CO-CARE (negotiated, reqs focusing on patient needs)

Patients, their relatives or friends

Research and development, the IT market

Figure 1 Stakeholders influencing collaborative care. It is obvious that different collaborating parties have different responsibilities, limitations and demands, as well as different aims and preconceptions about the collaboration. For collaboration to work, the parties have to communicate. All parties have to be aware of each others work, duties, and set limitations and aims. When several parties collaborate it is often difficult to formulate one single objective, without considering the goals of each single organization. It is, however, important that all parties are aware of the overall purpose of the work around a patient, and make sure that this is in accordance with their (organizational) goals, as well as with the patient’s goals. A non-complex case of collaboration is when a doctor in primary care needs to consult a specialist in a hospital. A complex case is when the treatment of a patient with multiple diseases requires the involvement of many units and professions. This kind of situation is common in palliative care. This paper focuses on the complex cases and the aim of achieving high quality patient care and an efficient utilization of resources in health and social care.

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Collaboration among different organizational levels

Collaboration takes place at top management, at middle management and at the operational level in health and social care organizations. Thus, there are often several organizations and organizational levels involved each with a responsibility for parts of the total care provided for the patient. Cooperation can hence be understood both from a strategic/tactical and from an operational perspective. Figure 2 shows eight paths of cooperation that we have identified. It also shows where vertical and horizontal, intra and inter organizational coordination is needed, which is in line with complex organizations’ continuous needs for both specialization and integration, stressing the importance of coordination [21]. The triangles in Figure 2 may represent any kind or size of care organization, i.e. county councils, municipalities, companies owned by these entities, or private companies, large or small. The difference in organizational types and sizes contributes to the complexity of the situation.

Top mgmt Middle mgmt

(1) Top mgmt

(3)

(2) Middle mgmt (4) (5a) Health and social care personnel

Health and social care personnel Patient and relatives

(5b)

Organization B (7)

(6) Patient and relatives Organization A

Figure 2 “Levels” of cooperation in health and social care. More specifically communication and/or collaboration are needed or desired: 1. Among top managers, to agree on shared strategies for health and social care, common goals and objectives, and a general level of collaboration. Large organizations may pose demands on smaller ones to act in certain ways when it comes to cooperation. 2. Between top and middle management in the same organization. Top managers need to agree on strategy and policy for distribution of responsibility. This must be conveyed to middle managers, who have to agree on routines and policy for how to achieve cooperation. In an operational situation the middle layer has to report e.g. about procured care services and how these perform. 3. Among middle managers in different organizations, in order to design collaboration structures between procurer and producer, and in order to agree on terms for the delivery of care services. 4. Between managers and the operational staff. Knowledge of strategy, policy and routines need to be conveyed to the care staff. The operational layer must provide information and performance measurements upwards. 5. Among operational staff in both health and social care. Those who work with patients need to inform others about treatments, activities, and changes in plans, or in the patient’s situation etc. a. Between individuals and professions at the operational level within the same unit. b. Between individuals and professions in different units. This staff needs to be able to coordinate health and social care, both from an immediate (during a day or from day to day) and a long term (i.e. concerning the complete care plan) perspective. 6. Between care personnel and the patient and his relatives or friends. Care staff have to inform the patient and their relatives about short and long term plans, as well as of changes to the plans. Patients and their relatives have to provide information to care givers on how they experience the provided care. 7. Between patients and relatives, for example in supportive patient’s associations. These groups can help the patient and his/her relatives understand the illness, its treatment and its consequences. Collaboration may take place among people from different units, for example, between hospital staff, personnel from the municipal social care and primary care staff (5b in Figure 2). This suggests that their respective managers have to communicate policies and guidelines (4 in Figure 2) and decide how they will organize and accomplish the cooperation at the operational level. Today managers are more aware of the need for an information infrastructure. Hence, there is a higher awareness of the needs for competence when identifying the kind of information required for improving communication and collaboration around a patient. Today different parties are responsible for different tasks and sub-goals, which complicate the achievement of the overall goal. The main organizational problem is therefore to get involved parties to agree on a holistic view of the care process, the different stakeholders’ roles, tasks, and restrictions and find ways to describe this common view.

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Need for organizational development and IT support

For IT support to work, it is necessary for people providing care for a patient to have a reasonably common understanding of the meaning of terms and concepts they have to share. 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 stakeholders. We believe that, to a certain extent, this is something one has to accept, but at least we need to be aware of it. However, in this context it is desirable at least to agree on terms and concepts concerning collaboration. The models, primarily information models that have been developed in the projects InterCare [5, 6], Sams [7, 8] and MobiSams [9] are important contributions to this issue. They build on a process describing important information exchanges around the patient, regardless of which organization that is responsible for the information. Based on these models, we need to develop a new set of ways to communicate the communication services related to different parts of the patient oriented process, so that all parts of the process are kept together. All actors involved should have access to useful information by means of common tools, such as web browsers. In addition, one may add ‘synchronous and asynchronous tele conferencing tools’ that may help people to meet or consult each other without having to travel physically. It is necessary that all actors involved get an understanding for each other’s tasks. This can be accomplished by providing regular discussion and training occasions that gather representatives from different levels and organizations. In the following we will provide a brief discussion of what types of support that may be needed at each level. 4.1 Top management Top management includes political levels such as the government, the Ministry of Health and Social Affairs and the strategic management of the Swedish Association of Local Authorities and Regions and the National Board of Health and Welfare. The Government determines the policy guidelines for the work of the others. There are also lower political levels i.e. the county councils and municipalities. The next level of management involves the CEO in both county councils and municipalities. Local government has a long tradition in Sweden. The country's municipalities, county councils and regions are responsible for providing a significant proportion of all public services. They have a considerable degree of autonomy including independent powers of taxation. Local self-government and the right to levy taxes are stipulated in the Instrument of Government. The local autonomy makes it extra difficult to agree on shared strategies and to carry through national initiatives. Top managers and politicians of different organizations will need to physically meet in order to get to know each other, and to discuss what is needed in order to accomplish good collaboration. For their respective areas of responsibility they have to set up goals, strategies, policies and restrictions for the collaboration of health and social care. The managers have to understand and agree on both the common responsibility and how it relates to the responsibility of their organizations. They have to understand their own role in the collaboration on a generic level. In order to achieve high quality and safe care, rules and guidelines that explicitly state the distribution of responsibilities have to be established. Methodological help, such as IT supported modeling sessions lead by skilled facilitators, is often needed to clearly state goals and policies. Suitable templates may be set up to help formulate the goals and policies. Various other means, such as disseminating learning materials, could be used. To achieve collaboration and coordination it is important to jointly create a common mental model over the core problem and the optimal core process on all levels. In addition, one should agree on an agenda for implementing and adjusting the care process to optimally fit all stakeholders, including the most important – the patient. It is the responsibility of top management to ensure that such a common mental model is established. It would be advantageous if representatives for middle management and operational staff could take part in these discussions. To complement physical meetings other kinds of distance media can be used, including synchronous and asynchronous conferencing systems. 4.2 Between top and middle management The top managers, such as directors for counties or municipalities, will as managers of procurement have to communicate with middle management, for example with welfare officers, managers for

primary health care and managers for hospitals. Overall goals and requirements need to be conveyed to and agreed among the middle managers. Requirements have to be further discussed and refined so that demands for responsibility allocation, routines and workflows, methods, templates and other tools are clarified. Suitable means, usually IT supported, have to be set up for the middle managers to properly aggregate and report results and problems to top management. To achieve this, the top and middle managers of each organization have to meet and discuss. Assistance from requirements experts, as well as methodological support, such as various tools for modeling, designing and describing routines and processes, can aid this process. 4.3 Middle management to middle management Middle managers such as welfare officers, primary health care managers and managers for hospitals and other related organizations have to communicate among themselves and over organizational borders. Jointly they have to develop routines, methods, and templates that help: • • •

state and express quality requirements and develop devising protocols and methods for measuring quality in every day practice, which then can become part of the normal way of working, plan how to take collaboration into account during procurement, with agreements between procurer and producer, the design of routines for collaboration and, in that context, how to utilize IT support for communication and collaboration between units on an operational level.

For this the managers will need some aid from experts as well as various tools for modeling, designing and describing routines and processes. 4.4 Between management and operational staff Methodological and developmental support is needed for managers and operational level experts in order to help them jointly build the necessary routines for how to collaborate on an operational level and to identify or develop suitable tools for this. They also need the means to disseminate decisions, to implement routines, and to help operational staff understand how they best should utilize the communication, coordination and collaboration tools. Introduction of new work routines and methods must be allowed its time in order for new ways of working and new IT support to settle effectively in the organization. Managers have to listen to user demands and wishes. Knowledge of health and social care must travel upwards in the organization. 4.5 Between operational staff within same organization or in different organizations At the operational level, we need to develop a whole set of new IT services to support coordination and collaboration. The new ways of working have to be described in terms of overall goals, processes and conceptual models for health and social care. These models also will function as the basis for building an IT support. The Sams [22] and MobiSams [1, 2, 3, 9] projects had the intention to clarify the patient’s own process, i.e. show how it works today, how the patient experiences it and how it would look, should the suggested new ways of working and the IT tools be provided. The research projects Intercare [5, 6], Sams [7, 8], VITA Nova [23, 24] and MobiSams have resulted in explicit knowledge on how improved and patient-centered collaboration among care providers can be accomplished. These improvements build partly on an enhanced way of working, and partly on a utilization of IT support aimed at strengthening collaboration. The IT support developed in Sams and MobiSams comprise a set of services that are well defined and built for communication. They make it possible to exchange information in a structured way. The services presently available concern: 1. Planning and coordination of the individual patient care process as a whole, including formulation of overall 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 resources for performing the planned activities. Assignment of personal responsibility for achieving goals and objectives for each task. Determination on 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 measured. 6. Conducting a follow-up and evaluation of the care process from the individual’s point of view. The services above are derived from an analysis of the care process from the individual’s point of view. This analysis has lead to the design of a set of adaptable generalized components (see Figure 3), the aims of which are to support the different parts of the patient process. These components can be adapted to different kinds of classifications, for example classification of activities, personnel categories, etc. The components are highly communicative with each other so that for example a particular activity can relate to a certain overall care plan, a local plan and their specific goals. The components can run in a distributed environment so that each care or nursing unit can have their own instances of the components. In this way, local storage of information can be achieved. The components can be reached through mobile devices with adapted interfaces to support home-based care etc.

Mobile gateway

Healthcare contact

Healthcare plan

Contact server

Activity planning

Carry out activities

Resource allocation

Follow up activities

Resource availability component

Communications level Referral/ answer component Healthcare contact component

Healthcare plan component

Activity handling component

Resources component

Agent component

Concept component (Adapt.)

Authentication

Log service

Authorization

Actor and address service

Healthcare contacts (Journal scr.)

Citizen information

Figure 3 The Sams/MobiSams IS architecture. The MobiSams project has implemented these tools in a ‘test-bed’, where they can be tested together with new ICT techniques, such as mobile and handheld devices. The project and the ‘test-bed’ were set up to facilitate learning and included ways of utilizing IT. Organizations and individuals that possessed knowledge about adequate platforms, architecture, networks and mobility technique suitable for making the applications useful in the care process participated in the work with the ‘testbed’. It has also proved to be very useful to have web-based knowledge management tools [25], for expert doctors and nurses to share knowledge and experience with field workers in e.g. home health care. 4.6 Between operational staff and patient/relatives First, the patient and/or his relatives/friend would have access to the patient’s care plan and diary. With some limitations, the patient also ought to have access to his medical record. Exactly what information, if any, the patient should be authorized to see, or possibly change, may be decided in each separate case, provided this does not require too much administration. The patients own demands and wishes have to be included into the set of requirements specifying the functionality of the cooperative IT support.

Tele conferencing tools for communication between patient and care giver has a great potential for reducing the number of patient visits to primary care or hospital and to make patients, relatives or friends feel more safe [26]. Last, but not least, useful information for interested patients can be disseminated via the web. This can take place on the initiative of particular clinics or patient organizations, such as done by the American Diabetes Association (see http://www.diabetes.org/home.jsp). These associations also provide tools for patients to monitor themselves and their disease. 4.7 Among patients and relatives/friends Patient organizations can play an important role in spreading knowledge and experience among patients and their relatives. This can be achieved either by the web or by means of other physical or electronic channels. They may also provide fora where patients can share experiences. Nowadays there are also private “blogs” where particular patients or e.g. parents of severely ill children share their experiences and feelings.

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Conclusion

In this paper, we have discussed how more and more patients are treated in their home by a set of people from different organizations and how this puts new and complex demands on the communication and collaboration among health and social care staff. We have further discussed the need for communication, collaboration and coordination on different organizational (managerial and operational) levels. In particular we have highlighted the need for organizational development and for a better use of IT support. More precisely we suggest that: -

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there is a need for both methodological and IT-related support for managers. Managers on different organizational levels need to formulate and refine goals for collaboration and design work routines for collaboration when it comes to procurement of health and social care services, as well as for collaboration at the operational level. Operational staff has to be involved in formulating goals and developing work routines for collaboration. video and teleconferencing can be a useful tools for collaboration and communication, both between managers and operational staff and between patients or their relatives and healthcare staff. there is a need for specialized software services to support collaboration and coordination at the operational level, all along the care process. This software has to provide both access for the authorized to medical information, and administrative support for coordinating the daily work of health and social care personnel.

We need, however, to delve deeper into the organizational challenges the inter and intra organizational collaboration poses, and into the precise requirements for the methodological and ITrelated support at various levels. Among the primary issues that remain to be addressed in depth is how to define and measure quality requirements when it comes to health and social care.

Acknowledgements The authors wish to thank VINNOVA (Swedish Governmental Agency for Innovation Systems) for sponsoring the MobiSams project where this work was done. Thanks also to all participants who took part in various phases of the MobiSams project and in particular Mats Gustafsson.

References 1

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Winge M., Lindh Waterworth E., Augustsson N-P., Fors U., Wangler B., “Exploring the concept of patientcentred collaboration in health care – a study of home care in two Swedish cities”, ISHIMR 2005 poster session, Thessaloniki 2005. Winge M., Johansson L-Å., Lindh-Waterworth E., Wangler B., Åhlfeldt R-M., “Interorganizational collaboration th in home care: A first discussion of requirements”, in Proceedings of 12 International Symposium on Health Information Management Research (ISHIMR 2007), Sheffield, UK, July 2007. Winge M., Johansson L-Å., Lindh-Waterworth E., Nystrom M., Wangler B., “A new care concept: Getting to grips with collaborative home health and social care”, Working Paper, Karolinska Institutet, 2007.

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