Exploring the Use of Large Clinical Data to Inform Patients for Shared Decision Making

Barriers to patient participation in the shared decision making process prevent patients from fully participating in evaluating treatment options and treatment selection. Patients who use a decision aid are more informed and engaged in the shared decision making process. Patient decision aids do not use real clinical data for patient information and may not represent the data well. We designed an interface, for a shared decision making aid, that leverages clinical data to inform risk ratios and create patient stories, or vignettes, and present a visual representation of quantified treatment outcomes data. Usability testing was conducted with experts to evaluate the interface and the utility of using real clinical information that patients can explore. The experts' comments were transcribed and coded for themes. Themes were quantified and comments were interpreted for refinement and modification to the patient decision aid interface and data visualization.