Patient-centered care was most recently defined by the National Academy of Sciences in 2001 as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”1 Notably, this care approach counters a unidirectional, clinician-driven model where the clinician’s voice and expertise is paramount. The introduction of the Patient Protection and Affordable Care Act in 2010 also heralded a major reform of the US health care delivery system, with an increased focus on patient-centered care delivery and research.2,3 The subsequent impact on cancer care payment through oncology patient–centered medical homes; alternative payment models such as the Oncology Care Model and its successor, the Enhancing Oncology Care Model; along with comprehensive investment in research, has further demonstrated an increasing prioritization of patient engagement to improve cancer care outcomes.2–5 Most recently, the US Department of Health and Human Services, in collaboration with the National Cancer Institute, released the National Cancer Plan roadmap, which is focused on 8 essential goals to improve the lives of people diagnosed with cancer, including delivery of evidence-based, patient-centered care.6
Cornerstone to patient-centered care is a highly functional patient–clinician relationship that is based on a collaborative partnership that promotes bidirectional communication, empathy, respect, comfort, and perspective-sharing.7–9 This partnership allows clinicians to better understand their patients as individuals with unique experiences, values, preferences, and care needs, and helps patients to better grasp their condition and evidence-based care options.9 Further supporting a patient’s early involvement in their health care, including identification of their care goals and treatment preferences, or the extent they wish to be involved in decisions (eg, shared or delegated to family or clinicians) is essential.10
Metastatic breast cancer (mBC), an advanced and incurable form of breast cancer,11 offers the opportunity to consider how a patient-centered approach can be operationalized in today’s oncology care environment. Given the complex nature of an mBC diagnosis, care teams often comprise multiple specialists, and treatment choices require weighing risks and benefits. Prioritizing the patient–clinician relationship is essential for guiding clinical decisions and delivering high-quality care that aims to improve outcomes.12 In 2022, a multidisciplinary working group comprising expert key partners in breast oncology, health services research, decision sciences, health literacy, and patient advocacy convened to form the Innovative Patient-Centered Decision-Making Consortium (I-PCDMC). Across 2 separate in-person meetings (July and October), the I-PCDMC discussed the current state of treatment decision-making in mBC care, including the key components of patient-centered decision-making (PCDM), best practices for implementation, and measurement of PCDM.
This commentary provides an expert-guided synthesis of the hypotheses, findings, components, and research gaps of PCDM for mBC care delivery, with the intent to optimally support the practice and measurement of PCDM over the long term. We propose a call to action for community-engaged, patient-centered research to identify strategies for implementation and measurement of PCDM in clinical practice.
Treatment Decision-Making in Oncology
To date, considerable scholarship has focused on shared decision-making (SDM) in the clinical practice setting.13–16 SDM focuses on eliciting patient preferences and values in evidence-based medical decision-making.13,17,18 It originated from a need to address observed clinical practice pattern variations that were unrelated to patients’ health status during preference sensitive decisions, as well as an increased focus on matching preferences and values to the available evidence-based options. Its emergence resulted in a shift away from a predominantly paternalistic model of decision-making.14,15,19,20 Despite being widely studied, routine uptake of SDM in oncology has been challenging, due to factors including variations in model definitions, existing research gaps, clinician-level barriers (eg, hesitancy/uncertainty on how to engage in SDM), and system- and institutional-level obstacles.21–24 Thus, there is an opportunity to shift the focus from individual decision-support tools for SDM to a broader decision-making model focused on preference-aligned decision-making that fosters an ongoing collaborative therapeutic alliance between the patient and clinician. Specifically, a PCDM approach encompasses the broader contextual factors that both the patient and the clinician bring to treatment decisions at various time points throughout the disease course.
Patient-Centered Decision-Making
A person-centered orientation throughout the care continuum is fundamental to PCDM. Core to the PCDM model is that the patient and the clinician have shared values and preferences, comprehensively discussed options, and then arrived collaboratively at treatment decisions that are preference-aligned. A PCDM approach elicits the patient’s decisional role preference, desired level of information-sharing, and preferences for treatment to better understand and align with outcomes that matter most to the patient when developing an appropriate and mutually agreed upon treatment plan.25–27 Key to PCDM is the clinician sharing a recommendation during the decision-making process that serves to contextualize their understanding of the patients’ knowledge, values, preferences, and goals into the decision at hand. Importantly, this approach encourages the clinician to share their own expertise, experience, and perspective, thus not placing the clinician in a passive position to merely present a myriad of options.
The I-PCDMC discussions highlighted 3 critical components of PCDM that are needed to support preference-aligned treatment decisions (Table 1).15,25–30 Additionally, Figure 1 depicts a proposed conceptual model for PCDM, outlining the key components of PCDM. This model could be adapted to any dyad involved in oncology care.
Key Components of Patient-Centered Decision-Making
Proposed conceptual model of patient-centered decision-making in metastatic breast cancer care delivery.
Citation: Journal of the National Comprehensive Cancer Network 22, 1; 10.6004/jnccn.2023.7113
Implementing PCDM in Oncology
Taken together, it is imperative to define a set of outcomes by which to assess PCDM effectiveness and scalability within a health care system. Although the PCDM approach has been examined,25–28 there remains a paucity of data describing implementation of PCDM, particularly within real-world oncology care delivery. To effectively demonstrate the value of PCDM, it is critical to show precisely how a PCDM approach results in better outcomes for patients. Proximal outcomes for assessing PCDM should be relevant to the interests of key partners (eg, patients, clinicians, caregivers/families, communities, health systems, and payers). Although there exist relevant proximal outcomes (eg, decision quality, satisfaction with decision-making, reduction in decisional conflict and/or regret, side-effect management, cancer treatment outcomes, and adherence) that could be leveraged to support the use of PCDM, challenges arise when considering the measurement of more distal outcomes associated with PCDM, such as quality of life and symptom management. There remains a need for validated measures of PCDM.
Facilitating Implementation of PCDM
To ensure optimal implementation of PCDM in clinical practice, key facilitators of PCDM should be considered. First, infrastructure and systems to support patient and caregiver health literacy (ie, understanding and use of health information) are imperative. Specifically, it is important to ensure that health information and resources are available to support patient comprehension of their condition so that they can make informed treatment decisions, to the extent possible, that are aligned with their preferences and treatment goals. Second, implementing effective PCDM strategies requires fully appreciating the patient’s preferences around how they wish to engage in their health care decisions, their understanding and willingness to participate in the care decision process (activation), and how these preferences may change across time and in relation to disease changes. Third, the health care environment must support the clinician’s facilitation of PCDM across multiple encounters. This includes adequate time, space, and team member support to elicit preferences, the ability to provide a link to psychosocial services and support beyond the face-to-face encounter (eg, psychosocial services), and the flexibility to allow patients and caregivers to digest information, process next steps, and make a treatment decision. Finally, effective implementation of PCDM in clinical practice requires being attentive to biases that exist within the health system itself (eg, structural racism and sexism, implicit bias, authority bias) that may hinder engagement in PCDM.
Call to Action: Recommended Next Steps
The I-PCDMC recommendations have resulted in a “call to action” to examine the critical components of the proposed PCDM conceptual model through community-engaged, patient-centered research into the implementation of PCDM in mBC care delivery. These include the following recommendations:
Identify and examine current PCDM approaches, tools, programs, and interventions (small and large scale) to further develop evidence-informed PCDM care delivery models in mBC.
Highlight effective implementation strategies to support and sustain the uptake of PCDM in mBC treatment and use these to help to bolster and inform evidence-based best practices and guidelines around PCDM in mBC care delivery.
Develop a PCDM measurement strategy by identifying an initial framework for PCDM and outcomes based on the key components of PCDM, including short- and long-term outcomes to best assess the effectiveness of PCDM interventions.
• Identify and investigate the role of relevant proximal (direct) and distal (indirect) PCDM outcomes, including consideration of how health literacy, patient activation/engagement, and health equity may impact successful attainment of PCDM or facilitate PCDM implementation.
Conclusions
Incorporating PCDM as a standard approach in mBC care delivery is needed, as this model can improve patient–clinician partnerships by ensuring preference-aligned, goal-concordant care that encompasses the whole person, and can support the selection of outcomes most meaningful to patients living with a currently incurable disease. There remains a substantial gap in understanding how oncology clinicians can optimally employ PCDM across the care continuum, as well as effective measures to assess and document its use in routine clinical practice.
Acknowledgments
The authors would like to thank Jacquelyn W. Chou, MPP, MPL, Natalie Land, MPH, and Richard Murphy, BA (research staff at PRECISIONheor), along with Jill Massey, PharmD, MBA, and Nancy Paynter, MBA, from Gilead Sciences, Inc., for their contributions to this work.
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