POLICY ASSIGNMENT: Person-centred Planning Policy A1 Appropriate Services Person-centred Planning Policy and Procedures What this policy aims to do Every service user will have an individual plan to ensure their needs and aspirations are identified Who th

Person-centred Planning Policy A1 Appropriate Services Person-centred Planning Policy and Procedures What this policy aims to do Every service user will have an individual plan to ensure their needs and aspirations are identified Who this policy applies to Every person who uses any of MASS services and all staff Who is responsible for carrying out this policy The Director or responsible managers and service delivery staff What words used in this policy mean ‘Person-centred practice’ is the approach to assist someone to plan their life and supports ‘Individual Plans’ capture individual goals, preferences and support needs to ensure that services provided support individual development ‘Inclusion’ means participating and feeling a sense of belonging as a valued member of the community ‘Work’ may include paid work or volunteering roles ‘Relationships’ can include family relationships, friendships and intimate relationships between adults Legislation this policy is based on National Disability Service Standards Victorian Human Services Standards NDIS Practice Standards UN Convention on the Rights of Persons with Disabilities Other relevant policies A2 Decision Making and Choice HS13 Duty of Care 2 Person-centred Planning Policy AA1 Service Access A5 Communication Support Version Date Author/Editor Approved by Notes 1.0 26/8/2016 Peter Lane 1.1 31/5/2018 D Stephenson Update format 1.2 27/5/2020 D Stephenson S Reeves Added NDIS references 1 PERSON-CENTRED PLANNING POLICY Person-centred Planning Policy MASS believes that all people should be supported to realise their individual capacities for physical, social, emotional and intellectual development. An individual, person-centred plan will be developed to capture individual goals, preferences and support needs to ensure that services provided support individual development. MASS will provide a positive environment and appropriate support to enable service users to fully participate in the individual plan process. Staff responsible for the individual plan will take the time to get to know the person (and family as appropriate) and facilitate opportunities for them to express aspirations, preferences and choices. An initial individual plan will be developed upon entry to MASS services. This plan will be reviewed within three months and then at least every 12 months thereafter on an ongoing basis (a more frequent schedule may be adopted for children and young adults). Typically, a planning meeting or a series of meetings will be coordinated to develop the individual plan – MASS will work to ensure meetings are at times and venues convenient to everyone involved to maximize the participation of people who can help ensure that the individual plan is a true representation of the person’s needs and aspirations. Individual plans are holistic and may include support to be provided by family, social networks and other services. Person-centred Planning Procedures 2 Person-centred Planning Procedures Prior to service entry:  Consultation will take place with the person and their family, advocate, guardian and/or others as appropriate, about the various perceptions of the person’s needs and issues which may impact on the delivery of services  Communication and support needs of the individual who will be receiving MASS services will be addressed to maximize their participation in the planning process  Staff responsible for the individual plan will take the time to get to know the person (and family) and facilitate opportunities to express aspirations, preferences and choices. All information provided to people will be in a format they can understand. On entry to the service:  An initial Individual Plan will be developed reflecting the needs and aspirations of the person and/or family and the supports required to meet those needs  One or more planning meetings will be coordinated to develop the plan  Meetings will be at times and venues convenient to everyone involved to maximize the participation of key people  The individual plan may be informed by other people who know the person but it must be person-centred and reflect the decisions and choices of the individual service user first and foremost. Content of the plan:  The individual plan will include goals (and support required) for each of the following: • health and wellbeing • participation (school/study/work) • independent living skills development • engagement in the local community • recreational activities at home or in the community • forming friendships and peer networks • taking holidays or overnight breaks • managing finances, material possessions and/or accumulating savings • self-expression including clothing, appearance (appropriate to their age) • exploring different lifestyle choices in relation to food, exercise etc  Individual plans may include support to be provided by family, social networks and/or other services  Some goals will be clearly defined while others may be vague or exploratory – that is the reality of people’s lives. It is important that goals are realistic Person-centred Planning Procedures 3  The individual plan will set clearly defined targets which are measurable and achievable within time given frames  Once agreed, a copy of the plan will be made available to the person/family in a format they can understand (and may also be provided to family members and guardian/administrators where appropriate and with the consent of the person if an adult). Review of the plan:  The individual plan is a living document and can be modified or reviewed when required  After the first three months of service delivery the initial plan will be reviewed  At minimum the individual plan will be reviewed and redeveloped every 12 months (a more frequent schedule may be appropriate for children and young adults).

How to strengthen patient-centredness in caring for people with multimorbidity in Europe? [Internet] Show details Contents Search term Appendix 1Rapid review of the literature For this policy brief we used data from various sources. First, we included

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Appendix 1Rapid review of the literature

For this policy brief we used data from various sources. First, we included European, national and regional policy and strategy documents directed at multimorbidity care, integrated care, and/or patient-centred care, provided by the participating country expert organizations and/or identified via the websites of the European Commission, WHO and Institute of Medicine. Second, we searched for relevant scientific publications via the online search engine PubMed. The search strategies that were used are presented in Table A. We repeated these strategies using the UK English spelling (patient-centred care, patient-centred approach) and included two additional review papers. Finally, publications identified from the reference lists of the studies found on PubMed were also included.

How to strengthen patient-centredness in caring for people with multimorbidity in Europe? [Internet] Show details Contents Search term References 1. Barbabella F, et al. (on behalf of the ICARE4EU consortium). How can eHealth improve care for people wi

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References

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How to strengthen patient-centredness in caring for people with multimorbidity in Europe? [Internet] Show details Contents Search term Policy brief Go to: Introduction Box Icon Box 1 What is patient-centred care? Box Icon Box 2 What is integrated care

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Policy brief

Introduction

Box Icon

Box 1

What is patient-centred care?

Box Icon

Box 2

What is integrated care?

The disease-specific way in which care is organized in European countries is not responsive to the needs of those who have multiple chronic conditions at the same time (multimorbidity). An estimated 50 million people in Europe have multimorbidity and this number is expected to increase in the future because of improvements in the early detection of chronic diseases and the development of increasingly effective treatments leading to higher survival rates [9], besides ageing, lifestyle and other factors. European health care systems are not responsive to the care needs of people with multiple chronic conditions, because care is organized and delivered in a fragmented and disease-orientated way. As a consequence, people with multimorbidity often receive incomplete, inefficient and ineffective care, which could lead to their receiving conflicting medical advice and to preventable hospitalizations [1012]. Given the increasing number of people with multimorbidity, the discrepancy between the care needs of these patients and the way in which their care is organized is becoming increasingly visible.

People with multimorbidity need care that is patient-centred (see Box 1). Patient-centred care is intertwined with integrated care (see Box 2). Establishing integrated care is a global strategy of the World Health Organization (WHO) [13,14], because it is an effective way of improving the quality of care while also making more efficient use of resources. This is especially the case for those who have multiple chronic conditions [15].

This policy brief focuses on how patient-centred care for people with multimorbidity can be strengthened and supported by policy and practice. Policy-makers who aim to put patient-centred care for people with multimorbidity on the agenda, as well as those who aim to further develop integrated care for them, can use this brief to support their work.

The policy issue: how to strengthen patient-centred care for people with multimorbidity

European countries recognize the challenge of providing care that meets the needs of people with multimorbidity and are searching for ways to make their health care systems more responsive to their needs. The adoption of a patient-centred approach is considered by many to be key to providing good quality care for people with multimorbidity [5,16], because it takes the needs, preferences and values of patients as a starting point in deciding on treatments and care, as opposed to desired disease-specific health outcomes. The latter are currently an important driver for treatment and care decisions, but are often not relevant or feasible for people with multimorbidity. Although patient-centred care is recognized as a precondition for good quality care, various challenges occur when giving shape to patient-centred care for people with multimorbidity.

Technical challenges include

  • Assessing patient-relevant outcomes to guide clinical decisions.
  • Tailoring care to the needs of patients.
  • Establishing structural collaborations between care professionals across and within sectors.
  • Establishing structural coordination of care from various care professionals.
  • Information-sharing among care professionals and between care professionals and patients and informal carers.

The technical challenges for collaboration between care professionals and the coordination of care are important, because people with multimorbidity often need care from multiple providers and various disciplines. Good collaboration between care professionals might reduce contradictory treatment and care decisions. Furthermore, it might enhance treatment and care decisions in line with the patient’s health goals while taking the consequences of other conditions and the treatment of these into account. Good coordination of care is important for making care more efficient and less burdensome for patients. However, besides technical challenges, there are policy challenges in the organization of patient-centred care for people with multimorbidity.

Policy challenges include

  • Knowledge gaps in effective strategies to establish patient-centred care.
  • Lack of clearly defined measurable goals for patient-centred care.
  • Knowledge gaps in effective financing methods that may facilitate the integration of care or collaboration between different disciplines and sectors.
  • Lack of management support to establish changes in care organizations.

In order to facilitate patient-centred care, policies should be in place that support changes at various levels of the care delivery process [5]. However, the development of evidence-informed policies to strengthen patient-centred care is difficult, because patient-centredness is a broad and multidimensional concept and has been operationalized in different ways. This policy brief therefore addresses the following questions:

  1. What are the key elements of patient-centred care for people with multimorbidity?
  2. What are the benefits of patient-centred care for people with multimorbidity?
  3. How can key elements of patient-centred care for people with multimoribidty be addressed in strategies to strengthen patient-centred care?
Box Icon

Box 3

Methods.

Findings

This policy brief provides insight into key elements of patient-centred care for people with multimorbidity, the benefits of patient-centred care and possible strategies to support patient-centred care.

Key elements of patient-centred care for people with multimorbidity

Although patient-centred care is relevant for all patients, it is especially relevant for people with multimorbidity. Furthermore, when taking multimorbidity care as the point of departure, patient-centred care may actually go beyond what is generally discussed in the scientific literature, which is most often concerned with single-diseases and short-term care. The key elements of patient-centred care for people with multimorbidity are summarized in Table 1 [5,1724]. These elements can be grouped into three categories: 1) those related to responding to patients’ preferences, needs, values and resources; 2) those related to the involvement of informal carers; and 3) those related to the integration and coordination of care services.

Table 1. Key elements of patient-centred care for people with multimorbidity.

Table 1

Key elements of patient-centred care for people with multimorbidity.

1. Customizing care to the needs, preferences, values and resources of patients

Customizing care to the needs, preferences, values and resources of patients is central to a patient-centred care approach [17,25]. In current health care systems in Europe, the disease-orientated (or ‘what is the matter’) approach is most often the point of departure when care is provided. Moreover, evidence-based practice, often directed at improving clinical outcomes, is the usual answer with this approach [26]. However, this type of care will not always lead to the treatments and outcomes that are most responsive to the needs of people with multimorbidity. For people with multimorbidity, the focus on evidence-based practice and on clinical outcomes might not be responsive to their needs for two reasons: 1) the evidence that certain treatment options are effective in patients with multimorbidity is often lacking; 2) clinical outcomes might be irrelevant or less relevant for these patients.

The challenges of using single-disease, evidence-based guidelines for people with multimorbidity, a population that has been rarely represented in the efficacy trials underlying guideline recommendations and is vulnerable to the risks of polypharmacy, are increasingly being recognized [2729]. Clinical practice guidelines that focus on the management of a single disease can be impractical, irrelevant or even harmful for people with multimorbidity [30]. Moreover, patients might attach great value to the ability to walk pain-free or to be able to get dressed without help, but little value to clinical outcomes, such as having good average blood glucose levels. In other words, the outcomes of care that people with multimorbidity consider to be relevant may be very different from the outcomes considered to be relevant by care professionals. Therefore, the ‘what matters to you’ (or goal-orientated) approach is a more suitable point of departure than the ‘what is the matter’ approach in care for people with multimorbidity, because it transcends specific diseases and focuses on the needs and goals of individuals (patient-relevant outcomes) rather than clinical outcomes. Patient-relevant or goal-orientated patient care outcomes can include physical functioning, severity of symptoms, quality of life, role and social functioning, and emotional status [31,32].

Patient-centred care for people with multimorbidity therefore requires a shift in thinking and acting in terms of clinical outcomes to thinking and acting in terms of patient-relevant outcomes. The outcomes that patients want to achieve should guide decisions on treatments. When patient-relevant outcomes have been identified, treatment options to achieve these outcomes can be discussed [33]. Patients with multimorbidity are likely to be confronted with ‘preference-sensitive’ decisions, which include therapy that may improve one condition but make another worse or may lead to long-term benefits but to short-term harm [20,30]. These ‘preference-sensitive’ decision moments should be recognized by care professionals [30] and the benefits and harms of treatment options should be made explicit to make sure that patients understand the balance between the potential benefits and harms of treatments [30]. After sufficiently informing patients, their preferences with respect to treatment and care options can be assessed and could, in combination with clinical feasibility, inform treatment choices [30,34]. Explicitly inviting patients (and/or their informal carers) to participate in the decision-making process and encouraging them to express their goals and concerns, as well as to ask questions concerning their care and treatment, are all important elements of patient-centred care [35].

Additionally, to customize care to the needs of patients, it is not only important to take the patients’ preferred outcomes and treatment options into account when making treatment decisions; it is also important to take into account their resources, as well as their health and personal histories [13,25]. Patients’ resources include, for example, their self-efficacy, literacy skills and options for social support. Patients with strong self-efficacy and a strong social network might be more able to perform self-management tasks than those with low self-efficacy and a weak social network. These patients might need more support from care professionals.

2. Involving informal carers as co-clients and co-care providers

Many patients with multimorbidity receive support from their family or friends (informal carers) in their care, which mainly occurs outside the health care setting. When a person becomes chronically ill, this not only affects their own life but also that of their family and friends [36]. Often, the partner and/or children will support their loved one in coping with his or her chronic conditions, fulfilling the role of caregiver [37]. At the same time, the chronic conditions can impact on relationships between the person with the conditions and their partner and/or children. It can be burdensome for informal carers to take care of their loved ones on a long-term basis [37]. Furthermore, multimorbidity is common among elderly people and they frequently receive support from their elderly partners [38,39]. Care professionals should be aware of these issues and should recognize informal carers as a group with emotional support needs and care needs of their own. Informal carers have a double role as co-care provider and co-client. They stand between the needs, preferences and values of the patient on the one hand and the integration and coordination of care on the other. Informal carers need to be adequately informed, involved in treatment decision-making, given emotional support and involved in the coordination of care between various care professionals [37].

3. Integration and coordination of care

People with multimorbidity often need care from professionals from various disciplines. Receiving care from different care professionals that are all working to their own disease-specific treatment plans can be burdensome for patients, because they have to follow different treatment regimens and may need to visit various specialists on a regular basis [27]. In some cases, it can even introduce health risks for patients when they receive conflicting treatments from different providers [27]. Collaboration between the various disciplines and care professionals, as well as good coordination of care, are therefore of great importance and key elements in patient-centred care for people with multimorbidity [40]. The creation of effective links between primary and specialist services is important to enable more effective diagnosis, faster referrals and smoother care transitions [14]. Coordination of care not only concerns coordination across care professionals but also the coordinating of care over time [41]; for example, through improved information flows and establishing long-term collaborations between providers [41].

People with multimorbidity may not need only health care but may also require social care, such as support at work or at home. Multimorbidity does not only impact a person’s health but also affects their ability to function in society, including being in the workforce. This means that the social domain should also be part of the integration and coordination of care: care should be integrated across sectors. This could, for example, be done by including social workers as key members of primary care teams [2,14].

In order to coordinate care from multiple care professionals and disciplines, it may be effective to appoint one person as the care coordinator [41]. The general practitioner (GP) could take up this role or alternatively a new function could be created. The integration of care may require new functions that go beyond a single-disease focus [41].

Benefits of patient-centred care for people with multimorbidity

Some perceive patient-centred care as an intrinsically good way of providing care, regardless of whether it achieves other instrumental or pragmatic goals, because it fulfils the obligation of health care professionals to place the interests of the patient above everything else [42]. Research on the effects of patient-centred care is scarce and, to our knowledge, not available in the context of multimorbidity. Nevertheless, studies on patient-centred care in general suggest that it has beneficial outcomes; for example, in terms of patient satisfaction with care, improved self-management and the more efficient use of resources [21,31,32]. There are also many other potential benefits described in the literature (see Table 2) [14,24].

Table 2. (Potential) benefits of patient-centred care.

Table 2

(Potential) benefits of patient-centred care.

Strategies to strengthen patient-centred care for people with multimorbidity

In this section, patient-centred care is translated into strategies, in part based on the WHO global strategy for integrated and people-centred care (2015) [13,14] and on insights from the review of international scientific literature [24,31,32,4446]. Strategies are proposed on three levels, as described in Table 3: that of the care professional (micro-level), the organization (meso-level) and the system (macro-level). It is important to focus not only on the changes that can be made at the care professional level, because whether care professionals are able to provide high-quality care greatly depends on organizations and systems [24]. The three levels are intertwined, as strategies at a certain level often require actions on other levels; for example, in order for organizations to establish integration or coordination of care (meso-level), appropriate legal frameworks are often required (macro-level).

Table 3. Strategies and barriers for providing patient-centred care for people with multimorbidity.

Table 3

Strategies and barriers for providing patient-centred care for people with multimorbidity.

Strategies that are particularly important to support patient-centred care for people with multimorbidity include: firstly, using patient-relevant outcomes as the basis for treatment decisions; and, secondly, using patient-relevant outcomes as indicators of health care performance. Namely, improvements in disease-specific outcomes are neither likely to be feasible nor relevant for this patient group. A third strategy that is especially important for people with multimorbidity is assigning to the patient a single contact person (e.g. a ‘trusted doctor’ or ‘trusted nurse’) to coordinate care from various providers. Finally, in order to support collaboration across disciplines and sectors (which is especially important for people with multimorbidity), policy, legislation and regulation that go beyond individual sectors need to be established [3].

The implementation of strategies can be hampered by various structural or individual barriers, which are also listed in Table 3. Apart from these barriers, country-specific characteristics can also affect the extent to which certain strategies can be implemented; for example, in countries with a strong primary care system, it might be easier to integrate and coordinate care, by having the GP as the central coordinating point for care professionals, than it would be in countries with a weak primary care system. Furthermore, some countries might have more resources to enable the implementation of strategies than others [47].

Patient-centredness in innovative care programmes in Europe

An important finding of the ICARE4EU project is that there are currently few programmes in European countries that have been evaluated, so it is difficult to assess their impact. Furthermore, findings from the ICARE4EU project show that few national or regional policies or strategies are available to support patient-centred care for people with multimorbidity in European countries. Consequently, initiatives are currently being organized at the grassroots level.

1. Customizing care to the needs, preferences, values and resources of patients

Current programmes in European countries customize care to the needs, preferences and values of patients in various ways. The basis for providing patient-centred care is communication with patients and informal carers to assess their needs and preferences, and to discuss possible treatment options to reach their goals, while taking their personal resources into account.

Assessment of needs, preferences and values

Current innovative programmes use several tools to assess patients’ needs, preferences and values and to involve them in decision-making about their treatment, care and preferred outcomes. These tools mainly comprise motivational interviewing and providing information leaflets. Other tools include: the use of narrative counselling techniques in order to understand patient needs; pre-treatment discussion sessions among treating doctors on how to motivate patients to participate in decision-making; assessing the knowledge of patients and their informal carers.

Individualized care plans

When the patient and their care professional have agreed their health goals, as well as care and treatment options, an individualized care plan can be used to record the decisions. Most of the selected innovative programmes included an individualized care plan for all patients, or for a specific group of patients (such as especially complex cases or vulnerable/frail patients). In the Belgian ADS project, priorities in the individualized care plan are being set by the patients themselves [48]. A second example in which a personalized care plan is used, is the Dutch INCA model [49]. In this model, treatment plans are developed with each individual patient, adapted to the patient’s specific profile and personal preferences concerning not only the disease(s) he or she has but also taking into account health behaviours and psychological issues. Agreements between the physician and the patient are noted in the care plan. In the Finnish POTKU project, the patient’s health status and self-management support needs are assessed during an appointment with a nurse and an individualized care plan is developed with this nurse (see Box 4) [50]. In this project, the use of the care plan was found to have a positive effect on patient satisfaction with care.

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Box 4

The use of individualized care plans in the POTKU project [50].

Taking patients’ resources into account

People with more resources, such as knowledge, skills and a strong social network, might need less support from care professionals than those who have fewer resources. Of course, patients’ care needs also depend on their health status. Some innovative programmes pay specific attention to the needs of vulnerable subgroups, such as ethnic minorities, people with lower health literacy, people with mental disabilities, people who live in socially deprived areas or people from low income groups. Furthermore, some programmes pay specific attention to so-called ‘complex cases’, i.e. those patients who have extensive care needs because of severe morbidities and limited resources (e.g. limited social support).

A programme that was developed and implemented in the Valencia region of Spain adopted an approach based on the Kaiser’s Stratification Risk Pyramid to define complex patients [51]. In identifying complex cases, the care professionals in this programme take various factors into account, including availability of family support and social and economic needs. The goals of tailoring care to the needs of complex cases are to improve the quality of care for these patients and to keep them in the community as long as possible. This approach of patient stratification according to complexity is similar to the approach of the Finnish POTKU project [50]. In the POTKU project, patients’ resources are explicitly taken into account when customizing care to their needs, and various ‘clientships’ are developed that guide the care professional in arranging care (see Box 5).

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Box 5

The use of patient profiles to customize care in the POTKU project [50].

2. Involving informal carers as co-clients and co-care providers

In almost half of the selected innovative care programmes, the involvement of informal carers was described as an objective. Recognizing the needs of informal carers is an important first step in taking them into account as co-clients. Informal carers are addressed as co-clients in, for example, the Belgian ADS project, which assesses the burden on the informal care-givers as part of the total needs assessment of the eligible patients [48]. At the same time, this programme involves informal carers as co-care providers, by including them in the discussion of individualized care plans, which include actively supportive activities for informal carers. The re-evaluation of the ability of informal carers to provide care is a point of attention in this project.

Furthermore, the programme from the Valencia region supports informal carers as co-care providers by offering them the possibility of direct contact with professionals to clarify daily care issues. In order for informal carers to be recognized and supported as co-care givers, a formal cooperation between informal and formal care-givers might be helpful. However, the selected innovative care programmes indicate that a formal cooperation between informal and formal care-givers is still infrequently established.

3. Integration and coordination of care

In order to provide good quality care (e.g. to avoid overlap in treatments and polypharmacy), integration of care from various disciplines and/or organizations is important. Findings from the ICARE4EU project concerning the integration and coordination of care are described in more detail in another policy brief in this series [2]. The following section therefore only addresses the key aspects of integration and coordination of care.

Integration of care from multiple disciplines

Improving the integration of different units within an organization was the main objective of most of the 101 selected innovative programmes, while improving the integration of different organizations was an important objective for almost half of the selected programmes. The merging of different units or different organizations remained difficult, however, and was established in less than a quarter of the 101 selected programmes. The 101 selected innovative programmes most often involved GPs and primary care practices. Care professionals outside the health sector, such as home helps and social workers, were still relatively infrequently involved. Organizations such as social care organizations, patient organizations, community/home care organizations, nursing homes, pharmacies and insurers, were also infrequently included as stakeholders in the programmes. In addition, government structures were also infrequently partners in the selected programmes. However, the integration of care from different disciplines can be established, as illustrated by the Danish Clinic Silkeborg programme (see Box 6) [52].

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Box 6

Integration of care in the Clinic Silkeborg programme [52].

Improving coordination of care is a main objective in most of the included programmes. Because patients with multimorbidity often receive care from multiple care professionals, having a single contact person who manages the care process is thought to increase the quality of care. In most of the selected programmes, one specific care professional was appointed to be responsible for general communication to the patient and for answering any questions they might have.

Patients being registered with a (primary care) physician of their choice, sometimes referred to as a list system, is an important feature that distinguishes certain health systems in different countries. Germany is a country in which such a system is not in place. However, through the introduction of the ‘trusted doctor’, the Gesundes Kinzigtal programme has been able to realize a kind of list system, which is known to be beneficial for coordinating care and avoiding unnecessary interventions [53]. In order to provide freedom of choice, patients can choose their trusted doctor from among GPs, specialists and psychotherapists.

In the Valencia region, a programme is available that integrates hospital, primary and community health services [51]. The programme introduces roles for two nurses who act as the hospital nurse case manager or the community nurse case manager. These are jointly responsible for monitoring the patient and interacting with other professionals as well as for checking the appropriateness of care received. The case management approach enhances patient-centredness by taking into consideration the patient’s own wishes and needs.

Digital communication systems can be effective in supporting the coordination of care between care professionals and are used in various ways in different programmes to achieve this, including: e-medication (a communication channel between doctors and pharmacists); video conferences for care professionals to exchange information; a joint platform for documentation by specialists and GPs. The programmes that include these communication systems are in Croatia, Finland and Germany. Electronic patient records are used in most of the programmes, providing access to relevant care professionals. The Valencia region programme is supported by an information system that is shared by all the actors involved in the care process, with the system containing, for example, the patients’ clinical documents and diagnoses. In the Belgium SOM+ programme, a comprehensive electronic system for patient monitoring has been developed, in which all care professionals involved in the project can find all relevant documents regarding the client (e.g. care plan, actions implemented) [48]. In the Dutch INCA model, the patients’ goals and treatment plans are communicated among all involved providers through a personal data store (see Box 7) [49].

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Box 7

Care coordination in the INCA model [49].

Discussion

Based on international scientific literature, as well as policy and strategy documents, this policy brief outlines elements of patient-centred care relating to: customizing care to the needs, preferences, values and resources of patients; including informal carers as co-clients and co-care providers; and the integration and coordination of care. In line with these elements, a number of strategies have been outlined in order to improve patient-centredness in caring for people with multiple chronic conditions, at the levels of: the care professional (micro-level); care organizations (meso-level); and the health system (macro-level). Insights from scientific literature are complemented with observations from the ICARE4EU project, which can serve as an inspiration for both (local) governments as well as care organizations and providers that wish to strengthen patient-centred care for people with multiple chronic conditions.

Limitations

Although we have identified a substantial number of innovative and potentially effective approaches to improving patient-centredness of multimorbidity care in European countries, there remains a lack of evidence on their effectiveness and effective components. This is due to the fact that most of these programmes have not been well evaluated. Data on process indicators are usually collected but this is far less often the case when it comes to outcomes. And when data on outcomes are collected, they often do not include outcomes that reflect what matters to patients themselves. Unfortunately, the scientific studies described in the international (mostly non-European) literature also do not provide much evidence on the effectiveness of various interventions to improve patient-centredness in multimorbidity care. This is because: 1) patient-centred care has been operationalized in many different ways, which makes it difficult to identify the effective components of patient-centred care; and 2) most studies on the effects of patient-centred care have not specifically targeted people with multimorbidity. Therefore, it remains unclear whether the (suggested) benefits of the studied patient-centred care approaches also apply to people with multimorbidity. Finally, a limitation of the ICARE4EU project itself was that we could not visit all the identified relevant programmes. So, it often remained unclear how patient-centredness was addressed in practice. Nevertheless, based on the current state of the scientific literature, as well as on the insights gained by studying the care approaches targeting patients with multimorbidity developed in European countries, a number of possible policy directions could be considered.

Policy implications

The performance of specific roles by care professionals, such as that of care coordinator (responsible for continuity and adjustment of care between care professionals) and of ‘trusted doctor’ or ‘trusted nurse’ (the primary point of contact for the patient) should be considered as indicators of health care performance. It is currently difficult for care professionals from different disciplines and sectors to collaborate, partly because different financing methods are used [3]. This is also reflected in the selected programmes from the ICARE4EU project; collaborations between health care and social care were infrequently established. In order to provide good quality care that is responsive to the needs of patients with multimorbidity, these collaborations need to be facilitated.

Patient-relevant outcomes need to be included as indicators of health care performance. Currently applied quality of care measurements address preventive and disease-specific care processes, disease-specific outcome indicators or overall mortality. For people with multiple chronic conditions, the overall quality of care depends on more than disease-specific processes and outcomes [31,32]; for example, quality can be dependent on the extent to which care is responsive to the needs and goals of patients.

Adaptations at the national or regional health system level can facilitate collaboration across and within sectors in order to better meet the comprehensive needs of people with multimorbidity. People with multimorbidity often need care from various care professionals. New roles for care professionals, such as ‘care coordinator’ or ‘trusted doctor’ could improve the quality of care for people with multimorbidity by, for example, reducing overlap in care and signalling problems patients might face earlier. When informal carers are involved, the care coordinator should be in close contact with them to ensure that a good collaboration between formal and informal care is established.

Innovative initiatives that aim to establish patient-centred care for people with multimorbidity at a local, regional or national level can be supported, along with process and outcome evaluations of these initiatives (e.g. an evaluation from the start based on patient-relevant outcomes). The ICARE4EU project found that the evaluation of innovative programmes is often lacking. Evaluations are important to gain insight into effective or ineffective ways of providing care that is responsive to the needs of patients with multimorbidity.

Conclusions

The burden of multimorbidity on patients and health care systems in Europe is increasing. This demands changes in health systems. A patient-centred care approach seems essential in meeting the needs of people with multimorbidity, but will also be beneficial to single-disease patients. Although many elements of patient-centred care apply to all patients, some are specifically important for people with multimorbidity; for example, good coordination and integration of services and a goal-orientated approach to care.

Based on the literature, there are several knowledge gaps when it comes to patient-centred care for people with multimorbidity. First, information on the effectiveness of patient-centred approaches to the care for people with multimorbidity is scarce. Especially in Europe, little effort has been made to study the effectiveness in practice of initiatives that have been implemented. Also, the lack of knowledge on effective strategies for implementing a patient-centred care approach results in weak guidance for policy-makers when developing reform plans [54].

Secondly, studies on the effects of patient-centred care seem to report mostly on the effects on the patient. Little is known about the potential impacts of patient-centred care on the care professional, health care organizations and health care systems. It is important to study the effects of patient-centred care at these levels as well.

Based on findings from the ICARE4EU project, it can be concluded that efforts are being undertaken in many European countries to improve the quality of care for people with multimorbidity by incorporating elements of patient-centred care. Nevertheless, certain elements of patient-centred care, such as the involvement of patients in shared goal-setting, the use of personalized care plans and the involvement of informal carers as co-clients and co-care givers are not yet generally applied. Furthermore, the improvement of care coordination and multidisciplinary collaboration is often the main objective of the programmes. However, collaborations are most often established within the same health care domain and not with social care organizations, patient organizations, nursing homes or informal carers.

Another conclusion that can be drawn, based on the findings from the ICARE4EU project, is that currently most innovative programmes are initiated bottom-up. In order to establish durable patient-centred care for people with multimorbidity, regulations that drive change top-down may be helpful. Only when shifts in the organization and delivery of care are made on all levels of the health care system, is it possible to drive lasting changes. The case studies from the ICARE4EU project can function as inspiring examples of how some countries and regions in Europe have given shape to patient-centred care for people with multimorbidity and can clearly indicate what the barriers to providing patient-centred care are.

The challenge health systems in Europe face is in managing the uniqueness of each patient on a large scale with limited health care budgets. This needs to be achieved by integrating health care with social care (e.g. home care) and the social environment of patients (e.g. informal carers and patient associations).

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