Capturing the patient voice: implementing patient-reported outcomes across the health system

Abstract

Purpose Supporting the capture and use of patient-reported outcomes (PROs) at the point-of-care enriches information about important clinical and quality of life outcomes. Yet the ability to scale PROs across healthcare systems has been limited by knowledge gaps around how to manage the diversity of PRO uses and leverage health information technology. In this study, we report learnings and practice insights from UW Medicine's practice transformation efforts to incorporate patient voice into multiple areas of care. Methods Using a participatory, action research approach, we engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation to inventory PRO implementations across the health system, characterize common clinical uses for PROs, and develop recommendations for system-wide governance and implementation of PROs. Results We identified a wide breadth of PRO implementations (n = 14) in practice and found that nearly half (47%) of employed PRO measures captured shared clinical domains (e.g., depression). We developed three vignettes (use cases) that illustrate how users interact with PROs, characterize common ways PRO implementations support clinical care across the health system (1) Preventive care, (2) Chronic/Specialty care, and (3) Surgical/Interventional care), and elucidate opportunities to enhance efficient PRO implementations through system-level standards and governance. Conclusions Practice transformation efforts increasingly require integration of the patient voice into clinical care, often through the use of PROs. Learnings from our work highlight the importance of proactively considering how PROs will be used across the layers of healthcare organizations to optimize the design and governance of PROs.

Normative data for the EORTC QLQ-C30 from the Austrian general population

“…Patient-reported outcomes (PROs) are the gold standard of evaluating the impact of cancer and its treatment from the patient's perspective. The importance of PROs is reflected in their widespread use as study endpoints in cancer clinical trials [1,2] and in the steadily increasing integration of routine PRO assessments in daily clinical practice [3,4]. Regulatory authorities such as the United States Food and Drug Administration [5] and the European Medicines Agency [6] have published guidance documents to foster the collection of high-quality PRO data in clinical trials.…”

Healthcare provider characteristics that influence the implementation of individual-level patient-centered outcome measure (PROM) and patient-reported experience measure (PREM) data across practice settings: a protocol for a mixed methods systematic review with a narrative synthesis

“…The aim of the proposed MMSR using narrative synthesis is to address an existing gap about the needs, capabilities, motivations, and individual factors influencing HCPs adoption behavior (i.e., integration of individual-level PCM data into daily practice for decision-making and care planning). The evidence on implementing PCM focuses predominantly on the CFIR domains about the intervention characteristics (e.g., [ 7 , 61 , 64 ]), inner setting, and implementation process [ 63 ]. To date, no single review captures the voice of end-users.…”

Innovations in research and clinical care using patient‐generated health data

“…Thus adverse events reported on clinical trials may not be generalizable to patients receiving the same treatment as standard of care. In contrast, PROs give a voice to patients 13,14 . Without PRO data from high‐quality studies, 6 patients instead may rely on anecdotal information from the internet about what to expect for a given disease and treatment 15 .…”

“…These initial concerns commonly focus on the time required to collect and address PROs in the clinic, lack of training regarding the interpretation and management of some PROs, patient burden, and liability issues if PROs are overlooked 231‐233 . Thus an important aspect of the successful clinical implementation of PROs is addressing provider concerns, including appropriate provider training and clinical decision support 13,14,18,234,235 . Concerns may also be ameliorated in part by communicating observed benefits of PROs reported by other providers.…”