The Patient-Reported Indicator Surveys (PaRIS) is an initiative of the OECD where countries work together on developing, standardising and implementing a new generation of indicators that measure the outcomes and experiences of healthcare that matter most to people. This report presents the results of the first international survey of primary care patients aged 45 years and older, with an emphasis on the largest and fastest-growing group of healthcare users: people with chronic conditions. By capturing patients’ self-reported health outcomes and experiences, this survey offers an invaluable perspective for assessing healthcare systems across the OECD and beyond.
Drawing on data from over 107 000 patients across more than 1 800 primary care practices in 19 countries, PaRIS provides a rich foundation for understanding how healthcare systems can better address the needs and priorities of patients.
The final report is the result of a shared effort of country officials, patient representatives, primary care professional representatives, experts, and the OECD Directorate for Employment, Labour and Social Affairs. The international PaRIS-SUR consortium provided technical support.
The development of this report was guided by Stefano Scarpetta, Mark Pearson and Francesca Colombo. The report was prepared by the PaRIS team of the OECD Health Division, with contributions from several members: Katherine de Bienassis led Chapter 6 on trust. Diana Castelblanco contributed to writing and analysis for Chapter 2 on country comparisons, and contributed to data management and statistical analysis for all chapters. Ángel González contributed to writing and statistical analysis for Chapters 3, 4, 5 and 6 as well as data visualisation. Chris James led Chapter 2. Candan Kendir led Chapter 3 about living with multiple chronic conditions and supported overall project management. Nicolás Larrain led the overall data management and statistical analyses tasks in close collaboration with the PaRIS consortium, carried out quality checks on analyses conducted by other authors, and led the writing of Chapter 7 about the methods. Michael van den Berg was responsible for overall project management, led Chapter 5 on inequalities and co-led Chapter 1 together with Frederico Guanais. Frederico Guanais was responsible for overall supervision, led Chapter 4 about people-centredness and co-led Chapter 1 together with Michael van den Berg. All authors reviewed and provided feedback on each other’s chapters, ensuring consistency and coherence throughout the report. Paul Gallagher supported the writing of Chapter 1 and the executive summary.
Administrative support was provided by Sabina Kovačić, Isabelle Vallard, Guillaume Haquin and Georgio Cerniglia. Communication support was provided by Lucy Hulett and Alastair Wood.
The International PaRIS-SUR Consortium supported the development of the survey tools and survey design, implementation, testing and data collection and data analyses and provided input on draft chapters of this report. The Consortium was led by NIVEL, the Netherlands Institute for Health Services Research and supervised by Mieke Rijken, Dolf de Boer and Judith de Jong. Other consortium members were the University of Exeter, Optimedis, the Avis Donabedian Research Institute (FAD) and IPSOS. See Annex A for more details about the PaRIS-SUR Consortium. The Technical Advisory Community advised the PaRIS-SUR consortium on technical issues, including the development of conceptual framework, survey tools and protocols, sampling methods, survey implementation, methodologies or analysis, data privacy, ethical issues and other scientific or technical issues.
The High-Level Reflection Group on the Future of Health Statistics signalled an essential gap in knowledge in their advice to the OECD Health Ministers in January 2017 and advised to invest in patient-reported measures. This was an important starting point for PaRIS.
The PaRIS project was steered by the OECD Health Committee and the OECD Working Party for the Patient-Reported Indicator Surveys, which was chaired by respectively Patrick Jeurissen, Gillian Bartlett‑Esquilant and André Peralta‑Santos. The OECD Working Party on Health Care Quality and Outcomes (HCQO) advised in the development stage of the survey. The Committee on Statistics and Statistical Policy (CSSP) advised on data collection, analysis and reporting. The National Project Managers led the survey implementation in their countries, including sampling, recruitment, testing and data collection (see Annex A). The international PaRIS Patient advisory Panel (PaRIS-PP) – chaired by Kaisa Immonen, Cecilia Rodriguez, Cajsa Lindberg, Cristina Parsons Perez, Rebecca Barlow‑Noone and Elizabeth Deveny between 2019-2025, was involved in each step, from the survey development till the dissemination of the flagship report results. The World Organisation of Family Doctors (WONCA) – represented by Amanda Howe, Harris Lygidakis, Job Metsemakers, María Pilar Astier Peña, Andree Rochfort and Anna Stavdal – advised on the design, development and implementation of the survey as well as the interpretation of findings and preparation of the flagship report. The International Expert Group provided expert advice on the data analysis and interpretation of results (see Annex A).
The initial outline for the design was created by the International PaRIS Taskforce, chaired by Patrick Jeurissen. José Bijlholt, Ian Forde, Niek Klazinga, Jillian Oderkirk and Luke Slawomirski contributed to the development phase of the survey. Kaisa Immonen advised from patients’ perspectives during the design phase. Diederik Aarendonk from European Forum for Primary Care (EFPC) and Piet van den Bussche from The European Association of Quality and Safety in General Practice/Family Medicine (EQuiP) provided feedback on the draft questionnaires. Joude Cachoux, Ella Nudell, Rushay Naik and Inês Francisco Viva contributed to the different stages of the project. Hannah Whybrow and Takumi Akama from the OECD provided administrative support during the design and development phases. Derick Mitchell, Cecilia Rodriguez, Elizabeth Deveny, Julie Spony, Kent Cadogan Loftsgard, Silke Schoch, Cristina Parsons Perez, Cajsa Lindberg and Rebecca Barlow‑Noone provided oral and written feedback from the patients’ perspectives on the draft flagship report. Mehmet Akman, Sara Ares, Viviana Martínez‑Bianchi, Raquel Gómez‑Bravo, Amanda Howe, Andree Rochfort, María Pilar Astier Peña from WONCA and Isabel Monteiro from EFPC provided comments from the primary care professionals’ perspectives on the draft flagship report. The colleagues from the OECD Health Division have provided invaluable input in all stages of the project. We are grateful to the patients with lived experiences who generously shared their stories that are included throughout this report.