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- W4289774564 abstract "Abstract Objectives The aim of the study was to identify POs’ views on the best ways to involve patient representatives and POs’ potential roles in the guideline process. Patient involvement in guideline development has been endorsed. The international guideline community has developed a toolkit to describe methods and facilitate patient involvement. The most used methods are commentary on the draft guideline and acting as guideline panel members. However, knowledge of the patient organizations’ (POs) perception of involvement is scarce. Methods Representatives from 12 POs (n = 20) in Finland were invited to group interviews (n = 4, á 1.5 h). In the qualitative analysis, we deductively identified using the Guidelines International Network public toolkit the best ways to involve patient representatives and inductively analyzed general principles for involvement and how the POs consider their potential roles. Results The interviewees raised three major principles for organizing patient involvement in guideline development: (i) different means of involvement, (ii) representativeness, and (iii) genuine and equal interaction. The interviewees endorsed involvement through statements and comments throughout the guideline process, and instead of participating in guideline panels as a member, they preferred reference groups or patients’ networks. The interviewees saw various roles for POs in guideline development, for example acting as confidants for patient representatives, information production, active participation, commenting, and communicative activities to population. Conclusions Guideline developers should offer various and easy ways of patient involvement. POs’ representatives considered reference groups to be a superior method of participation compared to guideline panel members. Organizations are willing to support guideline development and patient representatives." @default.
- W4289774564 created "2022-08-04" @default.
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- W4289774564 date "2022-07-01" @default.
- W4289774564 modified "2023-10-01" @default.
- W4289774564 title "Patient representatives need various methods to be involved in clinical practice guidelines: a qualitative study in Finland" @default.
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- W4289774564 doi "https://doi.org/10.1093/ijcoms/lyac008" @default.
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