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Bridging Perspectives: Guiding the Selection of Patient-Centered Outcomes in Rehabilitation Learning Health Systems
Megan E Schliep1, Pamela M Dunlap2, Jason Beneciuk3
1Department of Communication Sciences and Disorders, MGH Institute of Health Professions, Boston, MA; Spaulding Rehabilitation, Boston, MA.
None:
Patient-centered outcomes (PCOs) are health indicators that reflect what is meaningful and impactful to patients and are foundational to the success of learning health systems. PCO measures for rehabilitation learning health systems offer granular insights into patients' functional goals and quality of life, enabling clinicians to personalize care and researchers to evaluate what truly matters to patients. Despite their value, selecting appropriate PCO measures remains complex, requiring careful consideration of multiple shareholder perspectives. This paper, informed by discussions from the LeaRRn and CoHSTAR Summit on "The Power of Patient-Centered Outcomes in Rehabilitation Learning Health Systems," presents a framework for navigating these challenges in rehabilitation. We examine key considerations from the vantage points of patients, researchers, clinicians, and administrators that range from PCO measure feasibility, burden, and interpretability to psychometric rigor, workflow integration, and organizational priorities. Case examples illustrate how projects have engaged diverse shareholders to select PCO measures for use in clinical practice and research. The paper concludes with practical guidance for rehabilitation researchers seeking to align outcome selection with shareholder needs, optimize data utility across the learning health system cycle, and advance patient-centered care in complex rehabilitation contexts.
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