Values, principles, strategies, and frameworks underlying patient and public involvement in health technology assessment and guideline development: a scoping review.

The importance of patient and public involvement (PPI) is recognized by agencies involved in health technology assessment (HTA) and guideline development. However, a comprehensive overview of the underlying PPI principles, values, strategies, and frameworks is lacking. This scoping review aimed to summarize the available evidence on principles, values, frameworks, and strategies underpinning PPI carried out by agencies involved in HTA and guideline development. A total of twelve records were included, of which four referred to guidelines and eight to HTA. Overall, this review demonstrated a lack of consistency in the definition and application of the concepts of values and principles to PPI in the context of guideline development and HTA. There was significant overlap between values and principles, with some broad themes emerging, such as representation, transparency, relevance, equity, fairness, and reconciling different types of knowledge. Frameworks were typically based on the stages of guideline development or HTA, despite heterogeneity in how stages were labeled and described. Strategies were also mapped to the stages of guideline development and HTA and varied substantially depending on the context and setting. Both strategies and frameworks demonstrated patients and the public can be involved, albeit to a variable extent, throughout the stages of guideline development and HTA. However, frameworks often failed to explicitly link the values and principles with the HTA and guideline development stages through actionable PPI strategies. Further research is warranted to better understand the values, principles, and frameworks underpinning PPI in guideline development and HTA.

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.