More than just a voice: how the OECD’s Patient-Reported Indicator Surveys (PaRIS) Patient Advisory Panel drives action and results

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More than just a voice 2 How the PaRIS Patient Advisory Panel drives action and results with the OECD's 3 Patient-Reported Indicator Surveys (PaRIS)person's day-to-day self-care, and it offers continuity and a whole-person view that specialist services often 8 lack.This makes it essential for delivering coordinated, people-centred care.9 Yet, until recently, the lived experiences of people with chronic conditions in primary care have not been 10 captured in a consistent, international way.Health systems are often evaluated by workforce numbers or 11 clinical indicators, not by how patients experience care.Even when collected, patient-reported data is 12 sometimes seen as secondary.13 Key questions remain unanswered: How do people perceive their health?How do outcomes and 14 experiences vary across groups?Which aspects of care matter most?Do patients feel heard?Without 15 comparable international data from the point of view of those experiencing care, an evidence-based, 16 comprehensive perspective has been lacking.17 The OECD's Patient-Reported Indicator Surveys (PaRIS) addresses this gap.It embeds patient 18 involvement into every stage of the survey -design, implementation, and reporting.Over the past seven 19 years, the PaRIS Patient Advisory Panel (PaRIS-PP), made up of representatives from national and 20 international organisations, has shaped this process.While patient involvement in research is growing, 21 most examples remain episodic -tied to specific funding cycles or project timelines.Several countries 22 offer national frameworks for engagement, such as NIHR Involve (UK), SPOR (Canada), NHMRC 23 (Australia), and PCORI (USA).International organisations like the European Organisation for Research 24 and Treatment of Cancer (EORTC) and the International Consortium for Health Outcomes Measurement 25 (ICHOM) also involve patients, but typically focus on clinical research or outcomes measurement, not 26 system-level policy reform.In contrast, the PaRIS Patient Advisory Panel (PaRIS-PP) is embedded in an27international initiative designed to assess and improve primary care across health systems -a rare and 28 important shift.This paper outlines the practical impact of the PaRIS-PP's involvement and its implications 29 for policymakers, practitioners and policy researchers.

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