Patient-centered collaborative research: Exploring perspectives on clinical meaningfulness in metastatic breast cancer with clinicians, patients, and caregivers.

Abstract

338 Background: In metastatic breast cancer (mBC), treatment decision-making is informed by many factors including patient values, preferences, and care goals. Important to treatment decision-making is clinical meaningfulness, or the degree to which a treatment for mBC results in a meaningful change in the patient’s daily life, and clinically meaningful outcomes that are relevant to patients (e.g., survival, quality of life). However, patient and clinician perspectives and alignment on these concepts have not been well elucidated. Engaging patients and other key stakeholders as research collaborators is vital to guiding the delivery of high-quality cancer care focused on outcomes that patients considered meaningful. The aim of this work is to describe the implementation of an innovative multi-collaborator engagement with patient advocates and professional oncology societies to support a study examining perspectives on clinical meaningfulness in mBC treatment among clinicians, patients, and caregivers in the United States. Methods: This mixed-methods study utilizes qualitative semi-structured in-person and virtual focus groups to inform the development of collaborator-specific surveys on clinical meaningfulness in mBC. A multi-collaborator engagement approach was selected to support the conception, implementation, and completion of this study. Specifically, we have convened a collaboration with patient advocacy groups and professional membership organizations to engage researchers, patients, caregivers, and clinicians. The collaboration is designed to: i) facilitate the development of study protocols and key data collection documents; ii) review and reflect on findings and salience for relevant populations; and iii) participate in dissemination activities whereby collaborators co-create, co-present and discuss findings and their impact on clinical practice. Results: To date, we have partnered with four breast cancer patient advocacy groups representing sociodemographic diverse constituencies throughout the US and three oncology professional membership organizations. By describing how to implement these partnerships, we seek to present a collaboration roadmap that can be replicated and adapted to similar studies in oncology care delivery. Such a comprehensive and rigorous approach aims to enhance the quality of data collection and interpretation, generating evidence that will optimally improve patient-centered mBC care delivery and meaningful patient outcomes. Conclusions: Engaging patients and other key collaborators in research is important to generate clinically meaningful evidence to those involved in mBC treatment decision-making. This study offers a robust methodological approach for gaining insights into the delivery of patient-centered cancer care.