Patient and public involvement in clinical guidelines: international experiences and future perspectives

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.