Patient-reported outcome and experience measures in primary care: a scoping review of systematic collection and use

BACKGROUND: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognised as essential instruments for improving quality of care, accountability, and person-centredness. Primary care, as the entry point and coordinator of most patient journeys, is uniquely positioned to capture these insights systematically. Yet, while PROMs and PREMs are increasingly established in hospital and condition-specific contexts, evidence on their systematic implementation across primary care systems remains fragmented. This scoping review aimed to explore current programmes to the systematic collection and use of PROMs and PREMs in primary care, identifying common purposes, mechanisms, and enabling and challenging conditions across health system (macro) and organisational (meso) levels. METHODS: A scoping review was conducted following Arksey and O’Malley’s framework, refined by Levac et al. Peer-reviewed articles were searched across PubMed, Scopus, Web of Science, Embase, and complemented by grey literature search via Overton. Studies published in English or French between 2009 and 2024 were included. Data were charted to describe implementation scope, purpose, data collection mechanisms, and uses at different system levels. RESULTS: After screening 3,762 records and reviewing 211 full texts, 18 programmes met inclusion criteria. The initiatives identified revealed substantial diversity in purpose, maturity, and integration. Five programmes were primarily oriented to clinical care and quality improvement, while five national survey programmes embedded PREMs within performance monitoring and accountability frameworks. Reported enablers included clear governance structures and sustained funding (n = 6), interoperability with electronic health records or national data repositories (n = 8) and sustained professional and patient engagement (n = 4). PROMs most frequently addressed health-related quality of life/functioning and mental health domains (n = 7), whereas PREMs focused on access, communication, continuity and person-centredness (n = 8). Patient-reported data were used to support organisational learning cycles (n = 5), regional/national benchmarking and equity monitoring (n = 5), and system-level accountability (n = 3). CONCLUSION: Systematic use of PROMs and PREMs at the macro and meso levels in primary care remains uneven, with limited but growing examples of embedding in infrastructures that link patient-reported data to quality improvement and policy. Strengthening governance, digital integration, and capacity for interpretation and use is essential to realise their potential for accountability, equity, and person-centred primary care.

• ✓PROMs most frequently addressed health-related quality of life/functioning and mental health domains (n = 7), whereas PREMs focused on access, communication, continuity and person-centredness (n = 8).
• ✓Patient-reported data were used to support organisational learning cycles (n = 5), regional/national benchmarking and equity monitoring (n = 5), and system-level accountability (n = 3).
• ✓CONCLUSION: Systematic use of PROMs and PREMs at the macro and meso levels in primary care remains uneven, with limited but growing examples of embedding in infrastructures that link patient-reported data to quality improvement and policy.
• ✓Strengthening governance, digital integration, and capacity for interpretation and use is essential to realise their potential for accountability, equity, and person-centred primary care.