Implementing patient-centred care in the context of an integrated care program

Abstract

The patient-centred or ‘partnership’ approach to delivering care is widely acknowledged as a key feature of high-quality health care systems. The aims of patient-centred care are to encourage people to become active participants in health care decisions, and to act in partnership with them in a way that is respectful of and responsive to their needs, values and preferences. Integrated systems offer an ideal platform to optimise patient-centred care, given their focus on structures and processes that position patients at the centre, rather than the margins of health decision making. The Gold Coast Integrated Care program in Queensland, Australia, embodies the patient-centred approach in providing an alternative to hospital-centric services and better coordination of care for those with complex and chronic conditions. Multidisciplinary teams based in a Coordination Centre collaborate with the patient and primary care practitioner (General Practitioner) to undertake a holistic assessment of needs and risks that are managed and monitored through a shared health information system. This model is transformative for future services in enabling patient-centred, cost-effective, reliable and robust care for those with complex and/or chronic diseases.

Keywords

Coordination health services research multidisciplinary teamwork quality care pathways

Introduction

Patient-centred care (PCC) is indisputable as a central pillar of transforming 21st century health services. It is based on the premise that shared understandings between patients and health professionals will lead to safer, better quality care transitions and ultimately, the most effective and sustainable health outcomes.^1–5 These shared understandings should inform illness prevention, care pathways and the evidence base for clinical decisions, all of which must be respectful of and responsive to patient preferences, needs and values.^4,6,7 The global movement towards PCC includes strategic research initiatives such as the Patient-Centered Outcomes Research Institute aimed at engaging patients and their families as partners in research and care planning.⁸ The theoretical foundations of PCC (sometimes referred to as ‘person-centred care’) have also advanced over the past decades. Considerable attention has been given to conceptualising and defining PCC,^9–12 exploring health professionals’ views on PCC^13,14 and identifying organisational and stakeholder perspectives on barriers and facilitators to implementing PCC in health services.¹⁵

This body of research indicates that PCC comprises a number of interactive components of a partnership between patients and health professionals to articulate the patient’s health and illness experience across the continuum of care. Importantly, the partnership involves mutual, holistic understandings of the patient in his or her social and caregiving context and empowering people through health literacy to make personalised, realistic decisions for health.^6,10,11 Few would argue with such an ethically sound approach to care,³ but the details of how to translate PCC principles into practice are sparse in the health literature. As Faber et al.¹³ argue, the challenge of embedding PCC in practice requires a balanced judgement between health professionals’ and patients’ perspectives so that patients can make choices aligned with their desired outcomes and providers can maintain organisational and system requirements.¹³ This paper describes an integrated care system aimed at this type of alignment.

Integrated care models

Integrated care (IC) refers to the organisation and management of health services so that people get the care they need, when they need it, in ways that are user friendly, achieve the desired results and provide value for money.¹⁶ Australia is at an early stage of developing integrated models of care to reduce fragmentation of services through better coordination and continuity of care for vulnerable patients such as those with complex and comorbid conditions.¹⁷ PCC is integral to this type of service model, which is typically developed around a primary care hub such as a coordinating centre. The patient journey through the coordinating centre enables care pathways through a single point-of-entry, comprehensive, multidisciplinary services, case management, an organised provider network, defined referral and service procedures, enhanced information management and self-management support.¹⁸ The coordinating centre is similar to the patient-centred medical home which, in the US and UK health systems, has had major impacts on patient satisfaction, acceptability, outcomes and affordability because of continuity and comprehensiveness of care in the patient’s local environment, data-driven improvement for shared knowledge and prompt access to multidisciplinary team (MDT) care.^19–22 Lessons from evaluations of IC programs, including the patient-centred medical home, informed the development of the Gold Coast Integrated Care Model (GCIC).

The GCIC program

The GCIC Model was planned throughout 2013–2015 to improve services to the local population. A state-wide analysis of public hospital admissions and emergency department attendances over the past decade showed disproportionately higher rates in the Gold Coast local area. The region also had a rapidly growing older population at a greater rate than the national average. In addition, analysis of the number of visits to primary practitioners (General Practitioners (GPs)) showed that 3% of patients presented with five or more chronic conditions and 11.6% had three to four chronic conditions.^23,24 Formal and informal feedback from hospitalised patients also indicates that those attending hospital are often confused about their ability to access appropriate services with linkages between the hospital and their primary care provider. Fragmented, disconnected services are widely acknowledged in Australia as a result of the complex interplay of health service funding and division of responsibilities between the federal, state and local governments for both public and private service delivery.²⁵ These complexities and multifaceted payment arrangements linked to age, number of conditions and state and local program capabilities can influence service provision and timely access to health care. As patients with chronic and complex conditions require on-going care from several service providers, unnecessary confusion around service entitlements is common.^26,27

Following the lead of similar programs in the UK, the GCIC operates on the macro (shared governance between care organisations), meso (chronic disease status) and micro levels (care organised around individual patient needs).²⁸ This multilevel design is based on Wagner et al.’s²⁹ chronic care model (CCM) in focusing on holistic assessment of individual risk stratification to work in partnership with people at the highest risk of illness episodes and fragmentation of care. The CCM encompasses six interrelated elements for chronic disease care: health care organisation, delivery system design, clinical information system, systematic decision support, patient self-management support and links to community resources. The program also reflects Faber et al.’s¹³ three levels of involvement: communication aimed at fostering health literacy; consultation to gather direct patient input such as satisfaction and quality of life; and participation, including ongoing discussion of service and information needs.

The GCIC program began with an expression of interest sent to all General Practices on the Gold Coast, after which 14 practices (8% of the district’s General Practice population) volunteered to participate in the four-year ‘proof of concept’ trial. To identify patients from each practice who would be best served in the program, a process of risk stratification (illustrated in Figure 1) is undertaken. An initial contact by the patients’ GP and a subsequent call from a service navigator from the coordinating centre signals the beginning of a four-stage holistic assessment process, which culminates in the development of a care plan and pathway underpinned by a Shared Care Record (SCR). The SCR is an electronically enhanced Information and Communication Technology system that houses clinical informatics, patient registers, referral networks and ultimately, will provide telehealth and remote monitoring capability. The navigators launch the first stage, Evaluation, in a telephone conversation wherein patients are encouraged to share demographic, social and cultural information as well as complete a structured assessment of the way they see their health and quality of life. These data are collected using a combination of open-ended questions and survey instruments to create a baseline of clinical and demographic data. Included is an assessment of patient activation, goal-setting, problem-solving and coordination, which creates a foundation for discussions with the patient to help tailor their health guidance to individual needs. For patients unable to communicate by phone for language, cognition or preference reasons, the navigator organises to visit the patient at home or at the GP clinic. Both interactions are aimed at promoting health literacy to build knowledge and mobilise the patient and family’s social and cultural capital to support their health decision making.¹⁴ A diagnostic review/risk assessment is included in this step, which can include a medication review, mental health and frailty assessment, establishment of health goals and the need for extra supportive resources.

Figure 1.

GCIC program steps.

The second step is Discovery where the patient meets with members of the MDT to help tailor their shared care plan to their individual needs. This step is based on relationship building to encourage mutual decision making, thereby entrenching the partnership as instrumental to care. Step three, the Patient-Centred Care Planning stage, sees a review by the coordination team in collaboration with the patient’s GP to ensure completeness of the information base for planning. The fourth stage involves extended Communication, where the care coordinator ensures that the patient and family understand and agree with the shared care plan, ensuring that all elements of the plan are documented for the SCR, the GP, the Hospital and Health Service record and any other organisations or resources as appropriate, including addressing any guardianship issues such as advance care planning or power of attorney when required. This stage also focuses on health promotion and ascertaining patients’ and carers’ health literacy; that is, the extent to which patients and family members are able to access appointments, manage risks and undertake any self-directed management of their condition as mutually agreed. At this stage, patients assume control over their personal communication strategies, such as deciding who will have access to their SCR or other pertinent elements of care planning. Patient control over their information and their expressed preferences for referrals to particular resources or specialist services are seen as paramount to maintaining PCC.

At each stage of the holistic assessment, patients are informed that their information will be used as a basis for their individualised care plan, but they are given choices in the extent of information they provide. Assessment strategies are also patient centred in that patients have the choice to opt out of certain assessment tools or specific questions that are either not relevant to their situation or that they wish to refrain from sharing. Their care plan, including actions such as referrals or resources to be accessed and the schedule for intermittent updates, is maintained as a collaborative pathway, through consultation between the patient, GP and members of the MDT at the coordinating centre. The transparency of the plan on the SCR allows the patient autonomy and the discretion to accept or reject any referrals outside those decided upon and signed off by the GP in conjunction with their wishes.

The program is being carefully monitored over the next three years through a comprehensive evaluation led by Griffith University to investigate whether the program will result in improved health and well-being at no additional cost to the health care system. This pragmatic non-blinded, non-randomised controlled clinical trial design involves a mixed methods approach including analysis of both primary and secondary care utilisation, quality of life, satisfaction with care, social support and patient capabilities data. The economic evaluation will be conducted from the perspective of the Australian state and federal governments presenting the additional cost per quality-adjusted life years, with a series of generalised linear model regressions undertaken to model clinical and economic outcome factors. Qualitative patient and staff experience surveys and focus groups will contribute to the process evaluation to identify what worked, for whom and why. In addition, an impact evaluation will focus on the long-term projections for unavoidable hospital admissions and patterns of health service utilisation by patients as well as cost forecasts for the local district and other areas of Australia. The program aims to enrol 1500 ‘high-risk’ patients from March 2015 until June 2016 who will be matched to patients from the same Hospital and Health Service with similar demographics and hospital utilisation history who are not exposed to the program. Hospital utilisation will also be tracked over the duration of the study for this group of 3000 matched control patients, as well as quality of life, satisfaction with care, social support and capabilities for a sub-group of these controls.

Discussion

This paper has outlined what we believe is an ideal platform for a patient-centred approach to coordinating care for those with complex, chronic conditions. To date, 95% of the 900 patients invited to join the program have consented to participate, highlighting individuals and their carers’ willingness to embark on care with the opportunity to be considered as partners in making care decisions that are not only aligned with their values, needs and preferences but are made in collaboration with their GP and other service providers. In addition to 100 GPs from the 14 practices, these patients are being supported by 427 different allied health and specialist providers across 298 unique organisations. The program has a number of unique features, including the use of service navigators whose current role is to enrol patients into the program, but whose role in future will be as ‘transition coaches’, who can optimise the care path provided by members of the MDT collaborating with the patient and his/her GP.^30,31 As well as illustrating how PCC can be implemented in practice,¹³ our model of care also responds to the burgeoning research into PCC indicating the need to focus on communication, partnership and health promotion.³² At the heart of the partnership is a tripartite sovereignty between the patient (and their family), the GP and the public health service. A key factor in our health promotion strategy is a commitment to health literacy, and our evaluation is expected to show the extent to which people will gain in-depth understanding of their health and the confidence and capacity to make health decisions that are appropriate and acceptable to them.³³

A strength of the program is the substantial number of patients enrolled, which is an indication that the evaluation will yield meaningful information to inform future service planning. We have also attracted a team of highly committed and experienced MDT members, who are able to access the breadth of appropriate local resources to support patients’ and their GPs’ needs and preferences. On the other hand, the program is limited by the fact that it is currently a three-year ‘proof of concept’ endeavour in one geographic location, and its expansion to other local health and hospital services will depend on the results of the economic evaluation. However, there has been considerable interest from other service locations and several states who are responding to the need for national health reform with their own plans for improving care coordination, especially for those with complex and chronic conditions. The evaluation component is also limited by the sample of general practices who responded to the invitation to participate, as we do not have sufficient feedback to ascertain the reasons for non-participation. In the Australian context, patient-centred decision making can also lead to limitations as all patients have a choice about where to seek health care. For example, under the Australian Medicare system visiting a public hospital is ‘free’ to the patient, whereas quite often there are out of pocket expenses to visit the GP. In addition, patients are permitted to change their GP to one whom may not be on the GCIC program. A further limitation to the evaluation is that a chronic disease health population such as those enrolled in the GCIC are closer to death than another population.

In traditional health care settings, patients find it hard to articulate their needs, preferences and values, often deferring to the lead of health professionals in the health care encounter.³⁴ Yet, there is a common understanding among health planners and policy-makers that an informed patient whose views are foregrounded in the encounter and who is encouraged to share in decision making has a better likelihood of maintaining health and preventing illness or exacerbation of a long-standing condition. As well as being the crux of PCC, shared decision making is a tenet of evidence-based practice.^35,36 When patients are invited into the planning process, the result is better alignment of patients’ and clinicians’ expectations for health. Mutually agreed upon plans also have been found to reduce unwarranted variations in practice, thereby making health care systems more sustainable.³⁷ To help people engage in health planning requires that they become activated or receptive to acquiring the knowledge, skills and confidence to manage their health,³⁸ as acknowledged in Wagner et al.’s²⁹ CCM. Data analytic systems have also evolved considerably since Wagner’s model was developed, and our program has responded by developing an efficient and highly effective data linkage system to maximise the use of the SCR.³⁹ With sophisticated data analytic capability, this electronic record guides the daily activities of clinicians in the Coordination Centre, feeding in to the array of disease registers to proactively manage population risks.

Research evidence, strong leadership and supportive organisational attributes can create the conditions for effective therapeutic alliances.⁴⁰ Our evaluation includes staff feedback and satisfaction which is being carefully charted and acted upon by the leadership group. We are also proactively working towards safeguarding PCC by documenting patient perspectives to give them legitimacy and by making the patient–clinician interplay transparent and the subject of ongoing reflection and discussion. A major goal is to create an environment of trust, which is a key to permeating health encounters with a culture of PCC.^15,41 From a system perspective, our expectation is that evaluation data from the GCIC program will demonstrate cost effectiveness through reduced presentations to the hospital and improvements in the organisational capacity of specialist outpatient services, as well as providing safe, personally tailored care through a collaboratively developed pathway. This approach aligns both patient and provider priorities. In Australia, as in other countries, our health system has not always acknowledged the primacy of the patient. Our intention in developing the IC program has been to create the conditions within which PCC will flourish.

Lessons learned

‐ Integrated care models provide the structural conditions for health providers to place the patient at the centre rather than the margins of care.

‐ A patient-centred care approach can strengthen health promotion strategies by working towards patient health literacy.

‐ Integrated care can help reduce the burden of care for patients with chronic and complex conditions and their family members by focusing on communication, consultation, collaboration and an authentic partnership approach to care planning.

‐ Electronic communications media that enhance information management are essential to effective and efficient care coordination.

Footnotes

Authors Contributions

HC and AM drafted and revised the manuscript. MC participated in the design of the debate and review of manuscript. LW assisted with drafting, editing and preparation of the manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Program funding was provided by Queensland Health, the Gold Coast Hospital and Health Service and Griffith University, with evaluation funding from the Commonwealth of Australia Department of Health and Ageing.

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