FormalPara Key Points for Decision Makers

The Chronic Care Model (CCM) is a popular framework for health system improvement and organization of care for chronic conditions.

Goal-oriented care is a person-centered approach that elevates a person’s goals to inform care decisions agreed upon collaboratively.

We propose changes to how the CCM is operationalized to make it more person-centered using a goal-oriented approach.

A person-centered, goal-oriented CCM could guide the development of systems of care that are more focused on the person than on the disease.

1 Introduction

For decades, there have been calls to shift the focus of health care systems from disease management to care of the person as a whole [1,2,3,4]. However, the implementation and operationalization of person-centered care has faced many barriers [5,6,7]. As our care systems continue to experience strain from limited resources and high demand, aligning care with a person’s goals to prioritize or avoid undesired treatments could support health care system sustainability [2, 8].

The Chronic Care Model (CCM) is one tool that has been used to improve chronic illness management using a patient-centered approach and has been adopted in health care systems around the world [9]. In this article, we argue that the CCM remains too disease-focused and that it can become more person-centered by using a goal-oriented care approach. We identify opportunities to build on this seminal model by operationalizing its components using a goal-oriented care lens with the objective of advancing efforts toward truly person-centered care.

While an update to the operationalization of the CCM is insufficient to shift health systems to be fully person-centered, we believe it can offer systems and providers with actionable steps toward achieving more person-centered health models. It also aligns with discussions about how to incorporate patient preferences into measurement of value in health care systems [10]. As clinicians and scholars of goal-oriented care [11,12,13,14], we draw on both literature and our professional expertise to present a novel approach to CCM operationalization. We start with an introduction to goal-oriented care.

2 Goal-Oriented Care

Goal-oriented care is grounded in the concept of person-centered care. Person-centered care views medicine as promoting a person’s ‘life project’ by focusing on the whole person instead of their disease(s) [15,16,17]. It begins with the individual as a person and requires a strong therapeutic relationship between the clinician and the person.

Goal-oriented care is an approach to person-centered care in which the focus is on what matters most to the person seeking care over the course of their life. It uses the person’s goals to inform care decisions, which are arrived at collaboratively between clinicians and the person. While definitions in the literature vary, we use Mold’s definition of goals as desired outcomes that stand on their own merits, objectives as measurable steps along the path to a goal, and strategies as a way to reach an objective and ultimately a goal [18]. Critical to goal-oriented care is an understanding of the individual’s current and historical context, sometimes called ‘contextual evidence’, which includes a person’s specific life situation (e.g., participation in the community, poverty) and requires a trusting interpersonal relationship for strong provider–patient communication [12]. Mold has proposed that patient goals can fit into four health care-relevant categories: 1) prevention of premature death and disability; 2) maximization of current quality of life; 3) optimization of personal growth and development; and 4) experiencing a good death [11, 18]. These goal categories are not meant to be prescriptive, rather they can categorize goals or prompt individuals to think about their goals. For example, disability does not always mean a reduction in quality of life [19]. Similarly, maximization of quality of life or optimization of growth and development should not be interpreted as increasing productivity, but as supporting the individual’s values and preferences; for some, doing less may increase quality of life. While clinicians often endorse and report setting goals with patients, the goals tend to relate to disease management targets rather than patient priorities [20, 21].

Goal-oriented care does not have a single one-size-fits-all process or protocol. A recent concept analysis identified that goal-oriented care is a multifaceted, dynamic, and iterative process that embraces patient values [20]. Research on goal-oriented care shows that participants find goal-setting helpful, feasible, and associated with improved outcomes such as reduced treatment burden and avoidance of unwanted health care interventions [22,23,24].

3 The Chronic Care Model (CCM)

The Chronic Care Model (CCM), also referred to as the Care Model, has been widely adopted and implemented in health care settings [25]. Developed by Ed Wagner and colleagues at the MacColl Center for Health Care Innovation, it proposes a set of resource, policy, and organizational prerequisites for improving quality of chronic illness care [26,27,28]. The CCM emphasizes both evidence-based chronic illness management and the patient’s role as self-manager [27, 28]. Developers of the CCM highlight the importance of care that is proactive, planned, population-based, and patient-centered [29]. In a 2010 publication, the authors of the CCM broadened their concept of ‘self-management’ to include lifestyle domains such as alcohol and smoking [30].

As a widely adopted and effective tool promoting patient-centered care [9], the CCM is an ideal model to be operationalized with goal-oriented patient care. To date, implementation of the CCM has mostly tended to focus on evidence-based chronic illness management of single diseases (e.g., diabetes, cardiovascular disease, respiratory disease) [31,32,33]. That is not surprising, since evidence-based medical guidelines are generally based on clinical trials conducted in carefully selected patients, often with single diseases, despite the use of pragmatic randomized controlled trials which can be more inclusive of individuals with multiple conditions. Such studies are limited to findings on which interventions are effective under carefully controlled conditions and do not take into account patient preferences, which often differ from those of physicians or other patients with the same condition [10, 34]. They may provide insufficient guidance for individuals with multiple health conditions and competing priorities [2, 35, 36]. The person-centered care literature has highlighted this challenge [9, 15, 16, 37]. Thus, we see this as a timely opportunity to expand the CCM to the current context of multiple chronic conditions and person-driven goals rather than disease targets.

The CCM has been applied in various system redesign efforts, with studies most often implementing one or more elements of the model to improve outcomes that best suit their context [31,32,33, 38]. Davy and colleagues reviewed the effectiveness of CCM elements on health care practice and outcomes specifically in primary care. Self-management support was the most frequently used element in quality improvement interventions. Common strategies included care guides, individualized patient action plans, patient empowerment, goal setting, and motivation [31]. To measure the extent to which patients feel they have received care that is patient-oriented and congruent with the CCM, the Patient Assessment of Chronic Illness Care (PACIC) was developed. It includes a scale on collaborative goal setting, problem solving, and following up [39]. The PACIC was developed and validated in 2005 without explicit engagement of patients in tool development [29], a common problem with patient-reported measures [40]. While its psychometric properties are good and use of the instrument has been extensive, there may be opportunity to co-develop and/or update the PACIC to be a more person-oriented assessment tool.

We view the CCM concepts of self-management, individualized care plans, and goal setting as opportunities to enhance the model’s person-centered approach. These interventions have often been limited to single diseases [41], problem-based goals (i.e., disease-based targets) [42], or lifestyle changes [43], and patient goals or targets only appear as single components of the intervention rather than guiding the entire care approach. In response to self-management interventions, patients often report experiencing traditional didactic approaches over truly collaborative relationships with providers [44]. In the PACIC’s ‘goal-setting and tailoring’ scale, the items align with a medical perspective of self-management, for example asking whether the process “helped to set specific goals to improve my eating and exercise” [29]. These items remain focused on achievement of healthy behaviors or disease-specific targets which may not always align with personally meaningful outcomes. This may be a result of not including patients in the development of the PACIC scales. The self-management approach of exercising more to manage a chronic illness could be more goal-oriented and person-centered if it was directly linked to a personal goal (e.g., surviving long enough to see a daughter graduate from college). Kucukarslan and colleagues break goals down into two categories: lower-level (e.g., goals that involve symptoms—what we define as strategies or objectives) and higher-level, which are more abstract in nature (e.g., goals relating to job performance). A strong relationship between lower-level goals (i.e., strategies/objectives) that are often disease-based and set by the clinician and a person’s higher-level goals results in greater achievement of the lower-level goals [45].

4 A Goal-Oriented Chronic Care Model

In this section, we examine each of the elements of the CCM as defined by Wagner and colleagues and operationalize them with concrete approaches from goal-oriented care to demonstrate opportunities to enable more person-centered care. Given the CCM’s success in health care settings, we do not propose to replace the CCM or change it, but rather suggest ways in which it can be operationalized in a more person-centered way. Table 1 provides a summary of how activities support a goal-oriented approach, drawing on examples from the literature as well as the research and clinical experience of the authors. Table 2 provides concrete clinical examples to illustrate the operationalization of CCM elements in a goal-oriented approach.

Table 1 Comparison of the original Chronic Care Model (CCM) to a CCM operationalized with goal-oriented elements
Table 2 A case-based comparison of disease-oriented and goal-oriented approaches to operationalization of Chronic Care Model (CCM) elements

4.1 Productive Interactions

As originally defined, the elements of the CCM are intended to support productive interactions between informed and activated patients and a prepared, proactive practice team. Wagner et al. defined productive interactions as those that “1) elicit and review data concerning patients’ perspectives and other critical information about the course and management of the condition(s); 2) help patients set goals and solve problems for improved self-management; 3) apply clinical and behavioral interventions that prevent complications and optimize disease control and patient well-being; and 4) ensure continuous follow-up”[26]. The model specifies that to be active and informed, patients need to have information, skills, and confidence to engage with their care team and self-manage their condition. To be prepared and proactive, practice teams need the required expertise, patient information, and resources to ensure effective clinical and behavioral management [26].

Through a goal-oriented care lens, productive interactions in the CCM are more explicitly grounded in the patient narrative and context, with less emphasis on disease targets and disease control optimization. Interactions begin with clarifying each person’s context, resources and limitations, values, goals, priorities, and preferences and helping the person develop and carry out a plan by which to achieve their personal goals. That will often include disease management strategies, but only when it is clear to all parties that it will help the patient achieve their personal life goals and after considering other strategies as well. The operationalization of this enhanced CCM element requires connection (i.e., therapeutic relationships), co-creation (information sharing, brainstorming, strategizing), and collaboration (adjustments, ongoing support, and monitoring) around the person as a whole rather than around self-management of a condition [50].

4.2 Community Resources and Policies

The community resources and policies element of the CCM focuses on linkage between health care organizations and community resources to fill gaps in needed services [28]. For example, clinicians are expected to encourage patients to participate in effective community disease and symptom mitigation programs [51].

Focusing care on persons rather than their health problems helps to emphasize that the health care system is just one of several community resources available to help individuals achieve their goals, keeping in mind that resource distribution varies. As suggested in Barr’s expansion of the CCM, communities are not viewed as separate from health care organizations, but rather the context within which those organizations exist [52]. From the individual’s perspective, the community may be viewed as part of their team and community engagement is often required to achieve their goals. Rather than viewing the community as an entity to fill the gaps in the health system, clinicians can learn about the communities with which the individual identifies, programs they are engaged in, and help individuals find additional resources and opportunities that can help them achieve their goals [52].

4.3 Health Systems: Organization of Health Care

This CCM element emphasizes the organization and alignment of health system policies, resources, funding, organization, leadership, and incentives around chronic illness and preventive care [26]. These policies and incentives tend to be based upon guidelines for prevention or management of single diseases with an emphasis on standardization rather than individualization. However, many organizations are building patient satisfaction into their performance measurement strategies [9].

Goal-oriented care requires a shift toward policies and incentives for individualization. This model still recognizes the importance of chronic illness supports but requires a culture that emphasizes people over their diseases [11]. Each person’s goals bring clinicians within and across organizations into a circle of care that works together for and with the person seeking care [14]. In this model, quality indicators should focus on processes of care and universally meaningful outcomes such as ability to engage in essential and desired activities or a good death. To achieve this, quality initiatives should include the people providing and receiving care.

4.4 Self-Management Support

Self-management support in the CCM focuses on remediation of disease-related abnormalities, lifestyle changes (e.g., exercise), and disease-specific tools (e.g., self-measurement with blood pressure cuff and provision of informational resources) [32]. While helpful and appropriate, disease-oriented self-management recommendations can occasionally create unnecessary burdens for individuals and their families. For people with multiple co-morbidities, those burdens may increase to intolerable levels [23].

A goal-oriented approach moves the emphasis from disease-oriented self-management to collaboration between providers and individuals to prioritize care around whole-person rather than disease-oriented goals. This could include goal-elicitation tools to guide conversations between people and their care teams, ensuring conversations are aligned with what is meaningful to individuals seeking care [53]. Once identified, goal-relevant strategies and objectives are identified and agreed upon that the individual can and is motivated to employ with the ongoing support of the health care team.

4.5 Delivery System Design

Delivery system design emphasizes processes of care and the division of roles and tasks within practice teams, for example with physicians focused on acute care and non-physicians working to support self-management [28]. In a disease-oriented system, a person is likely to see a different specialist for each chronic condition. Each specialist works on an optimal treatment plan for that disease, leaving the coordination and reconciliation of treatments and medications to the person and their family physician.

A goal-oriented approach prioritizes strategies most likely to help a person achieve their personal goals, rather than implementing every evidence-indicated intervention. Clarification and documentation of a person’s goals and preliminary care planning precede the construction of care teams. Goal-oriented care supports interprofessional alignment and collaboration across settings since everyone is working to achieve the same person-identified goals [14].

4.6 Decision Support

Decision support in the CCM is focused on embedding evidence-based, largely disease-oriented guidelines into care processes and the electronic medical record and sharing those guidelines with patients. It encourages the use of checklists, prompts and reminders, feedback, and standing orders to ensure that guideline recommendations always remain visible [51]. The primary purpose is to reduce errors of omission.

Decision support for goal-oriented care is just as important as envisioned in the CCM, but it is more complex because it acknowledges that the evidence base is inadequate [54], especially in cases of multimorbidity. Goal-oriented care begins with a person’s context and goals and then applies evidence-based interventions to support goal attainment [36]. Many of the prompts and reminders are still applicable, but individualization and prioritization require more sophisticated algorithms such as health risk appraisal software to facilitate prioritization [47, 48], function-oriented guides to rehabilitation strategies, the ability to opt patients out of evidence-based recommendations when not applicable, and templates for individualized advance directives.

4.7 Clinical Information Systems

The CCM recommends the use of comprehensive clinical information systems to identify individuals for proactive care, share information, and monitor performance of the team and the care system [51].

Goal-oriented care requires a record system that can capture and display, in a usable format, information about patients’ contexts, goals, risk factors, resources, and limitations. The record should be a resource shared between the person seeking care, informal caregivers where appropriate, and the entire care team, including social and mental health supports.

Tange and colleagues proposed a goal-oriented record that places the patient’s personal life goals at the center and demonstrates information flow guided by goals [46]. Patients could also benefit from apps to help them formulate and electronically transmit goal-relevant information to their medical record. For example, the electronic Patient Reported Outcome (ePRO) tool is a mobile app and portal system designed for this purpose [53]. These apps and records shift the focus from data entry to interactions, connections, and co-creation of treatment plans.

5 Conclusion

The CCM is an integral part of quality improvement in health care systems around the world. It has supported systematic, evidence-based health care and self-management of patients with chronic diseases for decades and triggered the development of more effective and efficient care processes. However, we have argued that in its original state, the CCM is not sufficiently person-centered. To enhance the value of the CCM in a way that advances global priorities toward improved function and quality of life [1, 55], we propose operationalizing the CCM with a person-centered goal-oriented approach. This operationalization advances the continued efforts to shift from disease-oriented health systems to person-centered health systems. While acknowledging that this is not a silver bullet solution that will instantly transform health care systems everywhere, we believe it is an important step forward. Thus, we propose a conceptualization of productive interactions that more explicitly focuses on individual patient goals supported by a health system organized around individualization and prioritization, with appropriate incentives, and rooted in the community. Decision support and clinical information systems require a redesign to start with the person seeking care rather than the disease. In turn, this will lead to a more person-centered version of self-management that is about people achieving their goals rather than achieving clinical targets. Our proposed person-centered goal-oriented operationalization of the CCM elements is meant to be a starting point for further discussion and research on how to stimulate change that prioritizes the person at the center of care.