Patient representatives need various methods to be involved in clinical practice guidelines: a qualitative study in Finland (ORIGINAL ARTICLE)
Dublin Core
Title
Patient representatives need various methods to be involved in clinical practice guidelines: a qualitative study in Finland (ORIGINAL ARTICLE)
Subject
guidelines, patient participation, interviews
Description
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, a 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
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, a 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
Creator
Raija Sipila, Katri Hameen-Anttila, and Jorma Komulainen
Source
DOI : https://doi.org/10.1093/lyac008
Publisher
Oxford University Press
Date
4 August 2022
Contributor
Sri Wahyuni
Format
PDF
Language
English
Type
Text
Files
Collection
Citation
Raija Sipila, Katri Hameen-Anttila, and Jorma Komulainen, “Patient representatives need various methods to be involved in clinical practice guidelines: a qualitative study in Finland (ORIGINAL ARTICLE),” Repository Horizon University Indonesia, accessed February 21, 2026, https://repository.horizon.ac.id/items/show/11126.