Patient and public involvement in the development and implementation of clinical practice guidelines: what do developers say?

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France Légaré
Antoine Boivin
Susie Gagnon
Hubert Robitaille


Rationale, aims and objectives: Two factors believed to improve clinical outcomes are patient involvement and the use of clinical practice guidelines (CPGs). This study aimed to improve strategies for increasing the involvement of patients by asking groups involved in CPG development to identify the various characteristics of programs they use for involving patients (PPIPs, or patient and public involvement programs) and what barriers and facilitators they perceive to this involvement.Method: Embedded within a systematic review aimed at identifying existing PPIPs in CPG development and implementation, we conducted semi-structured interviews with representatives of provincial, national and international organizations that have developed and/or implemented a CPG using a PPIP. Ten key informants (response rate of 71%) consented to participate. We performed thematic analyses on verbatim transcribed interviews.Results: Eleven key informants across 6 countries (response rate of 78%) consented to participate. The main barriers identified were recruitment difficulties, concerns with representativeness, participants’ lack of familiarity with scientific content and lack of financial resources. Key facilitators were training, provision of supporting documents, support staff, financial assistance for participants, their professional background and a high level of interest. Socio-political factors such as networks as well as government policy also had a major influence on patient and public participation.Conclusion: Our results identify and categorize issues that concern many CPG organizations about patient and public involvement and pave the way for the adoption of strategies that will improve patient and public participation in developing and implementing CPGs as healthcare moves towards a more person-centered model.

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