Patient Engagement, Shared Decision-Making, and the Triple Aim: What's the Real Story?
Traci Rieckmann, PhD
Nathaniel Spofford, MPH
Oregon Health & Science University
The critical influence of patient engagement and their health care and health-related decisions has a long history of support in the public health and social science literature, resulting in theories such as the Health Belief Model (Mueller, 2012); Social Learning Theory and Self-efficacy (Bandura, 1986; Bandura, 1991) and Precede-Proceed Model (Green & Kreuter, 1991; Onken, 2011). More recently, engaging patients in their health care decisions has taken a new focus emphasizing the patient-provider relationship and Shared Decision-Making (SDM). This joint decision-making process encourages both parties to contribute to discussions related to diagnosis and interventions to create an individually tailored plan. Emphasis is placed on patient empowerment in the presence of the provider to ensure that the patient engages in the recommended intervention (i.e. behavior change, medication adherence, follow-up testing) and collaborates in their on-going care management. Although SDM has been associated with improved client knowledge, adherence and outcomes for some health conditions and clients (Hibbard & Greene, 2013; Greene & Hibbard, 2012; Mosen et al., 2007, Begum, Donald, Ozolins, & Dower, 2011; Alexander, Hearld, Mittler, & Harvey, 2012) very little research has been done with substance use disorders. Further, the underlying factors driving improvements in health status and patient involvement remain unclear. This ATTC Messenger article reviews the state of the literature related to SDM and patient engagement and activation as they relate to the treatment of substance use disorders.
What is Shared Decision-Making?
Shared Decision-Making (SDM)—a process in which the clinician and patient are both actively involved in information exchange and decision-making—emerges from several shifts in healthcare. As the push to improve outcomes, manage costs, and enhance quality shapes the majority of conversations in healthcare, attention has turned toward the patient’s role in their care and the patient-provider relationship. The process requires strong communication skills, client empowerment, and a trusting relationship between the clinician and client so that both parties’ contributions are valued and encouraged (Elwyn et al., 2012). Following a process focused on information sharing, discussing treatment options and alternatives, and collaboration in selection, SDM is being used more in both primary care and behavioral health services, including treatment for substance use disorders (Bradley & Kivlahan, 2014).
Overall, many researchers and practitioners believe that that SDM has the potential to increase patient satisfaction and improve health outcomes while simultaneously helping to manage costs (Lee & Emanuel, 2013). To this end, the Affordable Care Act (ACA) includes a provision encouraging greater use of SDM as a means of increasing engagement and promoting patient centered care. Although the implementation of ACA remains a work in progress, overall it supports practices that seek to ensure patients are directed to the proper care for their circumstances at the proper time. This might sound obvious, but it too often it has not been the experience for some patients as they traverse the labyrinthine and socially stratified health care system the nation is working to improve.
In many cases, including treatment for substance use disorders, there may be no clear “correct” treatment, but rather several potential options that are efficacious. Arguably, the appropriate intervention is the one that satisfies the patient’s personal preferences. In fact, the larger body of research on patient engagement confirms that higher rates of engagement result in increased patient satisfaction and more accurate expectations of benefits and harms (Baars, Markus, Kuipers, & Van Der Woude, 2010; Glass et al., 2012; Loh et al., 2007; Stacey et al., 2014). Evidence-based practices that rely on patient engagement also have been found to yield better patient outcomes. Examples include brief intervention for depression (Ludman et al., 2003) and motivational interviewing for substance use disorders (Carroll et al., 2006). Patient engagement also strengthens patient autonomy for those struggling with a substance use disorder (Joosten, de Jong, de Weert-van Oene, Sensky, & van der Staak, 2011).
A second important element promoted by the ACA, particularly for improving outcomes and constraining long term costs, is improving patient adherence to treatment (Veroff, Marr, &Wennberg, 2013). Patients demonstrate greater adherence to treatment when they are partners in making their health care decisions (Loh et al., 2007). Further aligning with the equity aim of health care transformation, patient engagement also has been suggested as an effective means of reducing racial and ethnic disparities in health care (Chen, Mullins, Novak, & Thomas 2015; Cunningham, Hibbard, & Gibbons, 2011). Thus, the evidence related to increasing patient involvement in their health care and decision-making is substantial. What remains are the specific factors or mechanisms that influence patient engagement across settings, health conditions, and individual patients so that we may better direct resources to improve outcomes and quality.
Shared Decision-Making: What’s the Current State of Affairs?
Despite the recent enthusiasm, a review of the scientific literature suggests that evidence regarding the effectiveness of SDM in promoting increased patient satisfaction or improved health outcomes is mixed. A recent systematic review of the effects of SDM included 6 studies that found various positive effects of SDM, including increased knowledge, higher customer satisfaction and improved treatment adherence and 5 studies that found no positive effect (Joosten et al., 2008). Of the 11 studies included in the review, 2 studies focused on people with mental healthcare problems (depression and schizophrenic disorders). Both studies found positive effects of SDM. These findings are consistent with the contention that SDM may be particularly well suited for management of chronic conditions, which frequently have multiple treatment options that require careful consideration of both clinical outcomes and patient preferences (Pollard, Bansback, & Bryan, 2015).
In terms of substance use disorders, only one randomized controlled trial examining SDM could be found. The study found that SDM improved client’s quality of life, drug use, and psychiatric problems within three treatment centers in the Netherlands (Joosten et al., 2009). Interestingly the protocol also increased client independence, autonomy, and control, both during and after treatment (Joosten et al., 2008). The clinician’s perception of the therapeutic alliance was improved when they engaged in SDM (Joosten et al., 2011). The current body of research is promising but also limited in scope and generalizability. Thus, while this initial work suggests that SDM may have a role for patients with substance use disorders, the research to date is insufficient to evaluate that hypothesis and understand the process and mechanisms by which outcomes are improved.
Patient Activation: The Core Ingredient?
In an effort to better understand the complexities and dynamics of the relationship between the patient and provider in SDM, we reviewed the literature on patient engagement and activation. A concept that is also receiving attention in the current healthcare policy arena, patient engagement includes activation and is supported by a substantial literature base related to improved patient experience, outcomes and cost (Hibbard & Greene, 2013). Patient activation is understood to be the degree to which an individual understands his or her role in the care process and also possesses the knowledge, skills, and confidence required to manage his or her own health and healthcare (Hibbard, 2004).
Patient activation may be particularly important to investigate further with behavioral health and substance use disorders in light of the inconclusive evidence overall regarding effectiveness of SDM. SDM interventions that that have demonstrated positive behavior changes have frequently had other components designed to increase patients’ knowledge or self-efficacy, which may partially account for the observed effects (Ludman et al., 2003; Joosten et al., 2011). Substantial research suggests that individual characteristics such as anxiety and depression along with social factors such as race and ethnicity can have a powerful influence on the patient-provider relationship, which in turn can effect whether a patient is comfortable participating in treatment decisions, regardless of whether they are encouraged to do so (Bankoff, McCullough, & Pantalone, 2013; Eliacin, Salyers, Kukla, & Matthias, 2015). In fact, there is evidence to support the notion that positive impacts of SDM may be moderated by a patient’s level of activation. Smith and colleagues found that among a nationally-representative survey of adults in the United States, higher patient activation was associated with greater perceived benefit of SDM for the majority of common medical decisions that were assessed (2015).
Patient activation also appears to have positive effects above and beyond its influence on the patient-provider relationship. Higher levels of patient activation are associated with increased adherence to preventive care recommendations (e.g., regular checkups and routine vaccinations), higher levels of healthy behaviors (e.g., eating a healthy diet and getting sufficient exercise), and lower levels of harmful behaviors (e.g., smoking and excessive alcohol consumption) (Hibbard & Cunningham, 2008; Hibbard & Green, 2013). Thus, this type of self-efficacy and engagement is associated with specific health-related behavior change and health care decision-making.
A limited amount of rigorous research has been conducted on patient activation and substance use disorders, but similar to the SDM work, initial findings suggests a direct relevance. Ray and colleagues (2013) found that among patients in HIV primary care clinics, those with current problematic drug and alcohol use were only half as likely to report high levels of comfort discussing substance use with healthcare providers. Furthermore, higher levels of patient activation and self-efficacy were also associated with increased comfort with these difficult conversations (Ray et al., 2013). Although such findings are intuitive, they highlight the fact that patients who would likely derive the greatest benefit from discussing substance use with their providers are the least comfortable making these critical and potentially life saving treatment decisions. Given that the patient-provider relationship has been described as particularly significant when it comes to addictive disease, this level of comfort and trust is critical to improving care and outcomes. The relationship is likely to be long-term, and sustained success is reliant on a shared understanding of the challenges of addiction and the ability of the provider to address those challenges in a caring and empathetic manner (Press, Zornberg, Geller, Carrese, & Fingerhood, 2015). Thus, current evidence related to patient activation is encouraging, but requires additional research related to clinical outcomes and healthcare utilization (Pollard et al., 2015).
From a health policy standpoint, increasing patient activation may be a core mechanism necessary for improving individual and population health and achieving the triple aim (Hibbard & Green, 2013). Encouragingly, research has shown activation can be effectively modified through interventions designed to build skill and confidence, particularly when they are tailored to support an individual’s current level of activation (Hibbard & Green, 2013). Evidence also indicates that activation may continue to develop as the result of positive working relationships between patient and provider, suggesting the possibility of a somewhat cyclical effect and pointing to the importance of both activation and SDM work synergistically. Although current evidence is building, more work is necessary to understand particular interventions that increase patient activation and in turn influence satisfaction, treatment adherence, and clinical outcomes—particularly in behavioral health and addiction (Pollard et al., 2015).
The notable paucity of research on the patient-provider relationship and decision-making in behavioral health and addiction presents a challenge for the field and healthcare broadly. Research repeatedly confirms the impact of mental health comorbidities and substance use on health status and utilization, but strategies for integrating interdisciplinary care are limited. Supporting improved communication between patients and providers, and overall engagement of patients, is likely a function of improved care models that attend to patient flow, access to services, training in collaborative decision-making and team based care— as well as specific patient level interventions. Thus, a critical next step is the development of rigorously designed mixed-methods studies and randomized trials to further explore both the process and impact of patient activation and SDM for patients with substance use disorders. One funding opportunity related to this type of patient-centered care is the Patient-Centered Outcomes Research Institute (PCORI). Additional information about PCORI and the work they are supporting can be found at http://www.pcori.org/about-us.
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