Values, principles, strategies, and frameworks underlying patient and public involvement in health technology assessment and guideline development: a scoping review
Ana‐Catarina Pinho‐Gomes, James M. Stone, Toni Shaw, Andrea Heath, Jane Cowl, Laura Norburn, Victoria Thomas, Sarah Scott
Abstract
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.