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Development of the Patient-Reported Indicator Surveys (PaRIS) conceptual framework to monitor and improve the performance of primary care for people living with chronic conditions
  1. Jose M Valderas1,2,3,
  2. Ian Porter1,
  3. Jimmy Martin-Delgado4,5,
  4. Mieke Rijken6,7,
  5. Judith de Jong6,8,
  6. Oliver Groene9,10,
  7. Janika Bloemeke-Cammin9,
  8. Rosa Sunol11,12,
  9. Rachel Williams13,
  10. Marta Ballester11,12,
  11. Katherine de Bienassis14,
  12. Candan Kendir14,15,
  13. Frederico Guanais14,
  14. Dolf de Boer6,
  15. Michael van den Berg14
  1. 1 Department of Health & Community Sciences, Exeter Collaboration for Academic Primary Care (APEx), University of Exeter, Exeter, UK
  2. 2 Centre for Research in Health Systems Performance, National University of Singapore (NUS), Singapore
  3. 3 Family Medicine, National University Health System (NUHS), Singapore
  4. 4 Fundació per al Foment de la Investigació Sanitària i Biomèdica de la Comunitat Valenciana (Fisabio), Sant Joan d'Alacant, Alicante, Spain
  5. 5 Department of Public Health, Universidad Católica de Santiago de Guayaquil, Guayaquil, Ecuador
  6. 6 Netherlands Institute for Health Services Research (NIVEL), Utrecht, Netherlands
  7. 7 Department of Health and Social Management, University of Eastern Finland, Kuopio, Finland
  8. 8 Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands
  9. 9 Optimedis AG, Hamburg, Germany
  10. 10 Faculty of Management, Economics and Society, University of Witten/Herdecke, Witten, Germany
  11. 11 Avedis Donabedian Research Institute (FAD), Universitat Autònoma de Barcelona, Barcelona, Spain
  12. 12 Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), Barcelona, Spain
  13. 13 Ipsos MORI UK Ltd, London, UK
  14. 14 Directorate for Employment, Labour and Social Affairs, Organization for Economic Cooperation and Development (OECD), Paris, France
  15. 15 Department of Public and Occupational Health, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
  1. Correspondence to Professor Jose M Valderas; j.m.valderas{at}exeter.ac.uk

Background

The Organisation for Economic Co-operation and Development (OECD) Patient-Reported Indicator Surveys (PaRIS) initiative aims to support countries in improving care for people living with chronic conditions by collecting information on how people experience the quality and performance of primary and (generalist) ambulatory care services. This paper presents the development of the conceptual framework that underpins the rationale for and the instrumentation of the PaRIS survey.

Methods The guidance of an international expert taskforce and the OECD Health Care Quality Indicators framework (2015) provided initial specifications for the framework. Relevant conceptual models and frameworks were then identified from searches in bibliographic databases (Medline, EMBASE and the Health Management Information Consortium). A draft framework was developed through narrative review. The final version was codeveloped following the participation of an international Patient advisory Panel, an international Technical Advisory Community and online international workshops with patient representatives.

Results 85 conceptual models and frameworks were identified through searches. The final framework maps relationships between the following domains (and subdomains): patient-reported outcomes (symptoms, functioning, self-reported health status, health-related quality of life); patient-reported experiences of care (access, comprehensiveness, continuity, coordination, patient safety, person centeredness, self-management support, trust, overall perceived quality of care); health and care capabilities; health behaviours (physical activity, diet, tobacco and alcohol consumption), sociodemographic characteristics and self-reported chronic conditions; delivery system characteristics (clinic, main healthcare professional); health system, policy and context.

Discussion The PaRIS conceptual framework has been developed through a systematic, accountable and inclusive process. It serves as the basis for the development of the indicators and survey instruments as well as for the generation of specific hypotheses to guide the analysis and interpretation of the findings.

  • Chronic disease management
  • Outcome Assessment, Health Care
  • Primary care
  • Quality measurement
  • Patient safety

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

https://doi.org/10.1136/bmjqs-2024-017301

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    Data availability statement

    Data sharing not applicable as no datasets generated and/or analysed for this study.

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    Footnotes

    • JMV and IP are joint first authors.

    • X @jimmymartin2

    • Correction notice This article has been corrected since it was first published online. The affiliations for the authors Rosa Sunol, Marta Ballester, Judith de Jong and Mike Rijken have been updated.

    • Contributors JMV and IP were involved in every stage of the project and contributed equally to the paper as joint first authors. JMV is the guarantor. JM-D was involved in screening references and data extraction. MR, JdJ, OG, JB, RS, RW, MB and DdB all contributed as members of the PaRIS Consortium and were involved in every stage in developing the conceptual framework and drafting the paper. KdB, CK, FG MvdB represented the OECD in providing oversight in each stage of the project and contributed to the drafting of the paper.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer-reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.