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Original research
Patient and public involvement in clinical guidelines: international experiences and future perspectives
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  1. Antoine Boivin1,
  2. Kay Currie2,
  3. Béatrice Fervers3,
  4. Javier Gracia4,
  5. Marian James5,
  6. Catherine Marshall6,
  7. Carol Sakala7,
  8. Sylvia Sanger8,
  9. Judi Strid9,
  10. Victoria Thomas10,
  11. Trudy van der Weijden11,
  12. Richard Grol1,
  13. Jako Burgers1
  14. on behalf of G-I-N PUBLIC
  1. 1Scientific Institute for Quality of Healthcare, Nijmegen, The Netherlands
  2. 2National Health & Medical Research Council, Canberra, Australia
  3. 3Centre Léon Bérard, Université de Lyon, Lyon, France
  4. 4Unidad de Evaluación de Tecnologías Sanitarias, Madrid, Spain
  5. 5Agency for Healthcare Research and Quality, Rockville, MD, USA
  6. 6Independent Guideline Advisor, Waipukurau, New Zealand
  7. 7Childbirth Connection, New York, NY, USA
  8. 8Agency for Quality in Medicine, Berlin, Germany
  9. 9National Consumer Advocacy Service, Auckland, New Zealand
  10. 10National Institute for Health and Clinical Excellence, London, UK
  11. 11Maastricht University, Maastricht, The Netherlands
  1. Correspondence to Dr Antoine Boivin, Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands; antoine.boivin{at}gmail.com

Abstract

Background Clinical practice guidelines (CPG) are important tools for improving patient care. Patient and public involvement is recognised as an essential component of CPG development and implementation. The Guideline International Network Patient and Public Involvement Working Group (G-I-N PUBLIC) aims to support the development, implementation and evaluation of guideline-oriented patient and public involvement programmes (PPIPs).

Objective To develop an international practice and research agenda on patient and public involvement in CPG.

Method 56 CPG developers, researchers, and patient/public representatives from 14 different countries, were consulted in an international workshop. Recommendations were validated with G-I-N PUBLIC steering committee members.

Results Many CPG organisations have set up PPIPs that use a range of participation, consultation and communication methods. Current PPIPs aim to improve the quality and responsiveness of CPGs to public expectations and needs, or to foster individual healthcare decisions. Some organisations use structured involvement methods, including providing training for patient and public representatives. A number of financial, organisational and sociopolitical barriers limit patient and public involvement. The paucity of process and impact evaluations limits our current understanding of the conditions under which patient and public involvement is most likely to be effective.

Conclusion Greater international collaboration and research are needed to strengthen existing knowledge, development and evaluation of patient and public involvement in CPG.

  • Quality of care
  • qualitative research
  • clinical practice guidelines
  • patient-centred

https://doi.org/10.1136/qshc.2009.034835

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    Footnotes

    • Funding AB holds a joint doctoral scholarship from the Canadian Institute of Health Research (AnEIS programme) and the Agence de Santé et des Services Sociaux de l'Abitibi-Témiscamingue.

    • Competing interests None.

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