Empowering Patient Organizations and Patient Involvement in Guidelines and International Societies Meetings: The Example of Incontinence

Urinary incontinence represents one of the most prevalent yet under-recognized chronic health conditions worldwide and also a challenging public health issue with unmet needs across age, gender, and geography. The purpose of this review is to summarize all existing literature on the role of patient organizations and active patient involvement in international societies and the formulation process of guidelines, regarding urinary incontinence issues. ology: A thorough literature search was performed on the PubMed database from inception to 24 July 2025, using the keywords “urinary incontinence”, “UI”, “patients”, “patient organizations”, “patient office”, “guidelines”, “international societies” and “international societies meetings”. All types of studies, including reviews, case-series, observational studies, retrospective and prospective studies were included. Moreover, the websites of professional societies, both general urology (American Urological Association, European Association of Urology, British Association of Urological Surgeons) and topic-specific (International Continence Society, European Reference Network for Rare and Complex Uro-Recto-Genital Diseases and Conditions, International Urogynecological Association) were carefully screened, emphasizing on how they organize patient involvement. Many organizations, such as the European Patients’ Forum and the European Reference Networks have institutionalized patient involvement in governance and guideline development. In Urology, Europa Uomo, the World Federation for Incontinence and Pelvic Problems, Prostate Cancer UK and US-based National Association for Continence, are leading examples. In order to ensure meaningful patient involvement, national and international societies and guideline panels must take some particular actions, such as inclusion of patient representatives in guideline formulation groups and training of their patient advocates in guideline methodology and public communication skills. By incorporating patient experience into the design, evaluation, and delivery of healthcare, Urologists and Urological societies at all levels, have the opportunity not only to improve their outcomes in urinary incontinence, but also to lead by example in reimagining what truly patient-centered care should look like. Despite the significant steps that have already been made, there is a current gap between intentions and actual performance.