The Role of Patient and Family Engagement in Shaping Clinical Practice Guidelines

Garlt Bert (1), Ully Terb (2)
(1) Karolinska Institute, Sweden,
(2) Uppsala University, Sweden

Abstract

Background: The inclusion of patient and family engagement (PFE) in the development of clinical practice guidelines (CPGs) is increasingly recognized as crucial for creating guidelines that are both relevant and effective. Engaging patients and families ensures that the guidelines address real-world concerns and preferences, potentially leading to better adherence and improved healthcare outcomes.


Objective: This study aims to explore the role of patient and family engagement in the formulation of CPGs, examining how their involvement influences the content and quality of the guidelines.


Methods: A systematic review was conducted, analyzing CPGs across various medical fields published between 2015 and 2023. The review focused on guidelines that explicitly reported PFE in their development process. Data was extracted on the methods of engagement, the extent of patient and family input, and the resultant changes in guideline recommendations. Quality assessment of the guidelines was performed using the AGREE II instrument.


Results: The review identified 45 CPGs that incorporated patient and family engagement in their development. The methods of engagement varied, including surveys, focus groups, and direct participation in guideline panels. Guidelines with robust PFE tended to have higher AGREE II scores, particularly in the domains of 'stakeholder involvement' and 'clarity of presentation'. Notably, these guidelines often included recommendations that better aligned with patient values and preferences, emphasizing shared decision-making and personalized care.


Conclusion: Patient and family engagement significantly enhances the relevance and quality of clinical practice guidelines. Involving patients and families in the guideline development process ensures that the recommendations are patient-centered, fostering greater trust and adherence to the guidelines. The findings underscore the importance of integrating PFE into all stages of guideline development to improve healthcare delivery.

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Authors

Garlt Bert
garltbert@gmail.com (Primary Contact)
Ully Terb
Bert, G., & Terb, U. (2024). The Role of Patient and Family Engagement in Shaping Clinical Practice Guidelines. Journal of Midwifery History and Philosophy, 1(2), 47–58. Retrieved from https://journal.ypidathu.or.id/index.php/midwifery/article/view/1221

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