Sharing Evidence to Inform Treatment Decisions (SHARE-IT): Generic tools for shared decision-making linked to evidence summaries and clinical practice guidelines

Abstract

Clinicians rely on dependable guidelines for point-of-care decision-making, while decision aids facilitate shared decision-making (SDM). However, both encounter challenges in production, underlying evidence, uptake, and practicality in clinical practice. Often, they overlook the treatment burden and practical aspects that patients must consider when integrating interventions into their daily lives. Trustworthy guidelines should incorporate patients' values and preferences for management options, but frequently fall short in doing so. In the thesis "Sharing Evidence to Inform Treatment Decisions (SHARE-IT): Generic Tools for Shared Decision-Making Linked to Evidence Summaries and Clinical Practice Guidelines," Anja Fog Heen and colleagues introduce an innovative framework for decision aids linked to an author and publication platform (MAGICapp) for guidelines and decision aids. This framework employs human-centered design principles and grounded theory. User testing in real clinical in- and outpatient consultations in Norway, Canada, and the United Kingdom revealed that clinicians and patients found the developed decision aids beneficial for shared decision-making and user-friendly. The platform also streamlined the development of decision aids from guidelines through digitally structured data. Patients actively sought more information about how interventions impacted their daily lives and treatment burden, while clinicians lacked tools to support these conversations. This led to the creation of a framework with 15 categories of practical issues, integrated into MAGICapp. This allows practical issues and potential treatment burdens to be actively and systematically included in decision aids and guidelines, and the framework has been incorporated into numerous guidelines featured in BMJ, particularly through the BMJ Rapid Recommendations. The development of this framework is reported in this thesis. In addition, a key standard for the development of trustworthy clinical practice guidelines involves anchoring recommendations in patient values and preferences. To inform a BMJ Rapid Recommendations guideline panel, a systematic review on patient values and preferences regarding aortic valve replacement was developed to offer valuable insights to a panel dedicated to formulating trustworthy guidelines and recommendations. The current body of evidence exhibited suboptimal rigor, addressing only a minority of practical issues and lacking consideration of outcomes deemed important by patients. This underscores the inadequacy of even high-quality guideline development methods in adequately informing guideline panels about patients' values and preferences. This prompts the question of whether researchers should expand their scope beyond traditional sources of evidence to comprehensively capture all relevant aspects of patients' values and preferences.