Page 17 - Shared Guideline Development Experiences in Fertility Care

38]. For resolving these de ciencies in the guideline development process, a new 1 approach to multidisciplinary guideline development is necessary. Furthermore,
the position of patients herein is unexplored as well.
Patients and guideline development
Patient involvement in guideline development is assumed to result in higher quality guidelines in terms of applicability, acceptability, usefulness, and enhancement of implementation [27, 38-45]. Patient involvement forms one of the key criteria of the Appraisal of Guidelines Research and Evaluation (AGREE) instrument used to assess the methodological quality of guidelines. Additionally, patient involvement is also widely advocated by institutional organisations as the National Institute for Health and Care Excellence (NICE), the National Health Service (NHS), the World Health Organization (WHO), and the Institute Of Medicine (IOM) [38]. us, guideline developers are increasingly urged to involve patients in the di erent steps of the guideline development process. Unsurprisingly, to increase the quality of care, which forms the major goal of guidelines, patients should play a considerable role. Professionals are the experts in the disease and treatment, but patients are the experts in having the disease and undergoing treatment. Nevertheless, patient involvement in guideline development is still challenging and only 25–50% of CPG developers regularly involve patients [43].
erefore, patient involvement is not the common practice in current guideline development, which can be attributed to a number of practical di culties. Firstly, various methods for patient involvement in CPG development could be used and practical guidance on how and when to apply these methods is lacking [40, 45-51]. Secondly, all methods are restricted to include a selected number of patients or patients’ representatives and do not involve a large population of patients. irdly, transparently integrating patients’ preferences into CPG recommendations is di cult and o en unclear [2]. Fourthly, organisational (e.g. recruitment of participants), nancial (e.g. costs of patients’ education or for conducting focus groups), and socio-political barriers (e.g. CPG developers’ resistance to including patients in the CPG group) exist [49]. Lastly, thus far, studies on the added value of patient involvement in the early stages of guideline development, as well as the e ectiveness and impact of patient involvement, are limited [51]. is situation urges the development of new approaches to explore the possibilities of involving patients in the various steps of guideline development.
Introduction
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