Patient involvement in contextualizing a clinical practice guideline in Iran
Authors: Sakineh Hajebrahimi, Neda Kabiri
Research Centre for Evidence-based Medicine, Iranian EBM Centre: A JBI Centre of Excellence, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran
Introduction
Clinical practice guidelines (CPGs) are the cornerstone for providing evidence-informed recommendations in the domains of clinical care, public health, and health policy. Trustworthy guidelines facilitate shared decision-making between health care professionals and patients, promoting individualize care, and their recommendations can be contextualized to facilitate implementation. Contextualizing these guidelines to local contexts is a crucial step in bridging the gap between research evidence and clinical practice. This contextualization process aligns with the knowledge-to-action cycle and is anticipated to enhance uptake and implementation of adapted guidelines, while improving resource efficiency. Patient and public involvement (PPI) in health care, whether in research or to inform policy decisions, is highly recommended based on ethical principles and the expectation that it will improve the relevance of the outcomes and quality of the decisions. The term "involvement" more accurately reflects this collaborative approach, emphasizing decision-making with or by patients and the public, rather than for them.
The problem
International guideline standards increasingly emphasize the importance of PPI in the development and contextualization of evidence-based clinical practice guidelines. One of the internationally accepted standard tools for appraising quality of guidelines, the Appraisal of Guidelines for Research and Evaluation (AGREE II) tool, is composed of six domains: scope and purpose, stakeholder involvement, rigor of development, clarity of presentation, applicability, and editorial independence. The “stakeholder involvement” domain of this tool refers to the views and preferences of the target population, which is crucial for ensuring that guidelines are relevant, accessible, and aligned with the needs and preferences of patients and the broader public. However, despite these standards, stakeholder involvement is low in almost all regions. To the best of our knowledge, the adoption of PPI in the contextualization of urological clinical practice guidelines within the Iranian health care system is still limited. To address this gap, it is essential to promote and facilitate PPI in the Iranian health care system. It should be noted that in such a context with resource constrains, adoption and adaptation are practical solutions rather than de novo guideline development.
The search for answers
In our current experience of contextualization of a clinical practice guideline for neurogenic lower urinary tract symptoms (LUTS) in Iran, we actively involved patients and the public throughout the phases of guideline development. This included PPI in the formulation of the clinical question (involving a current and a former patient), the contextualization phase (involving a patient advocate and a patient organization representative as members of the expert panel), and the external review phase (involving a current patient as an external reviewer). We also created a patient-friendly version of the guideline, using simple words and pictures, and included it at the end of our guideline as the “patient information” section.
Potential global impact
In light of the World EBHC Day 2024 theme of “Health and Beyond: From Evidence to Action,” to increase the applicability of this guideline in the Iranian socio-economic and cultural context, we considered the best available evidence during the contextualization process as well as the point of care needs, values, and preferences of patients. We hope that the implementation of this guideline in practice will help health professionals and improve the outcomes and quality of life of patients with neurogenic LUTS. Moreover, we expect that involving patients in different phases of this contextualized guideline and adding the patient-friendly version of this CPG will enhance health literacy, as well as informed decision-making, thereby strengthening patient–physician communication.
Next steps
Future research will focus on qualitative studies conducted in various settings within the Iranian health care system, including primary, secondary, and tertiary health care levels. These studies will explore the experiences, barriers, and facilitators of patients and health care professionals, regarding adherence to the contextualized guideline for the diagnosis and treatment of neurogenic LUTS.
References
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To link to this article - DOI: https://doi.org/10.70253/KVEW5810
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