Implementing Patient-Reported Outcomes in Clinical Practice: The PROTEUS-Practice Framework & Guide

Author(s)

Crossnohere N1, Anderson N2, Baumhauer J3, Calvert M4, Esparza R5, Gulbransen S6, Haverman L7, Li Y8, Petersen C9, Retzer A4, Gibbons C10, Stover A11, Thorner E12, Ursin G13, Velikova G14, Walker E15, Brundage M16, Snyder C17
1The Ohio State University, Columbus, OH, USA, 2University of Birmingham, Birmingham, Birmingham, UK, 3University of Rochester, Rochester, NY, USA, 4University of Birmingham, Birmingham, UK, 5National Coalition for Cancer Survivorship, Washington DC, DC, USA, 6University of Utah, Salt Lake City, UT, USA, 7Emma Children’s Hospital Academic Medical Center, Amsterdam, Amsterdam, Netherlands, 8Princess Margaret Cancer Center, Ontario, ON, Canada, 9Mayo Clinic, Oronoco, MN, USA, 10MD Anderson, Houston, TX, USA, 11University of North Carolina at Chapel Hill, Chapel Hill, NC, USA, 12PROTEUS Consortium, Baltimore, MD, USA, 13Epic, Madison, WI, USA, 14University of Leeds, Leeds, Leeds, UK, 15Strategic Communications & Planning, Philadelphia, PA, USA, 16Queen's University, Kingston, ON, Canada, 17Johns Hopkins School of Medicine, Baltimore, MD, USA

OBJECTIVES: Patient-reported outcomes (PROs) are patients' own reports about how they feel, function, and live their lives. Innovative practice payment models and quality metrics are increasingly rewarding PRO collection, but many health systems struggle to establish systems to collect these data. We sought to create a framework for PRO implementation and associated practical guidance to assist diverse health systems implement PROs in care.

METHODS: This knowledge translation project was an initiative of the PROTEUS Consortium (Patient-Reported Outcomes Tools: Engaging Users & Stakeholders), which helps to navigate the use of PROs in clinical trials and health care practice. PROTEUS includes representatives from 53 patient, clinician, research, industry, and policy groups internationally. A multi-disciplinary advisory committee representing perspectives including patient advocacy, clinical care, health information technology, diversity, equity and inclusion, and PRO measurement oversaw framework development. This framework was operationalized as a practical guide based on a review and synthesis of foundational resources on the topic. The framework and guide were further refined through circulation to >100 stakeholders.

RESULTS: The resulting PROTEUS-Practice Framework proposes three stages to developing PRO systems (design, implementation, and management), and outlines key considerations within these stages. Design considerations address system goals, training/engagement approaches, and determining which patients, which PROs and at what frequency. Implementation considerations include PRO administration and scoring, clinical workflow, and acting on results. Management considerations include integrating and viewing PROs in the electronic health record, data pooling/exchanging, inclusive PRO collection, and systematic program evaluation. The corresponding PROTEUS-Practice Guide provides updated, consolidated insights and options to assist users in making informed decisions tailored to their context.

CONCLUSIONS: The PROTEUS-Practice Framework and Guide offer a comprehensive roadmap for integrating PROs into care across diverse health settings, ultimately helping to facilitate the use of PROs to improve the quality and value of patient care and outcomes.

Conference/Value in Health Info

2024-05, ISPOR 2024, Atlanta, GA, USA

Value in Health, Volume 27, Issue 6, S1 (June 2024)

Code

HSD71

Topic

Medical Technologies, Methodological & Statistical Research, Patient-Centered Research

Topic Subcategory

Implementation Science, Patient-reported Outcomes & Quality of Life Outcomes, PRO & Related Methods

Disease

No Additional Disease & Conditions/Specialized Treatment Areas

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