Providing a Framework for Meaningful Patient Involvement in Clinical Practice Guideline Development and Implementation

The importance of patient involvement in guideline development is internationally recognised, yet there is a lack of clear methodology for integrating patient preferences and values in guidelines and a need to identify the optimum stages for involving patients in guideline production. European Association of Urology (EAU) guidelines have international reach, a rigorous guideline production process, an established patient information section, and existing links with European cancer patient organisations. This makes the EAU the ideal setting to test a framework for patient involvement in guideline development for genitourinary cancers. The EVOLVE study is a unique collaboration involving a professional society, guideline panels, researchers, clinicians, and patient organisations with the aim of designing a framework for meaningful patient involvement in guideline production. Stages for considering patient preferences and values were identified via systematic review and interviews with key stakeholders, then prioritised by patients and clinicians via an international Delphi study. The final EVOLVE framework will be tested within EAU guideline panels and a strategy to assess the impact of patient involvement in guidelines will be developed. PATIENT SUMMARY: There is increasing awareness of the need to include patient values and preferences when developing guidelines for medical practice. The EVOLVE study is designing a framework for patient involvement in guideline development. TAKE HOME MESSAGE: A framework for meaningful patient involvement in guideline development and implementation has been developed. The EVOLVE framework can help guideline developers to involve patients at the optimum stages of guideline production, which may improve the quality and relevance of guidelines.