Design of a patient-centered decision support tool when selecting an organ transplant center

Abstract

Patients in the US in need of a life-saving organ transplant must complete a long process of medical decisions, and a first step is to identify a transplant center to complete an evaluation. This study describes a patient-centered process of testing and refinement of a new website (www.transplantcentersearch.org) that was developed to provide data to patients who are seeking a transplant center. Mixed methods, including online surveys and structured usability testing, were conducted to inform changes in an iterative process. Survey data from 684 participants indicated the effects of different icon styles on user decisions. Qualitative feedback from 38 usability testing participants informed improvements to the website interface. The mixed methods approach was feasible and well suited to the need to address multiple development steps of a patient-facing tool. The combined methods allowed for large survey sample sizes and also allowed interaction with a functioning website and in-depth qualitative discussions. The approach is applicable for a broad range of target user groups who are faced with challenging decisions and a need for information tailored to individual users. The survey and usability testing concluded with a functioning website that is positively received by users and meets the objective to support patient decisions when seeking an organ transplant.