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.
Highlights
Patients in the US in need of a life-saving organ transplant must complete a long process of medical decisions, evaluations, and potentially long waits for a transplant
The randomized survey informed the selection of graphical icons used to represent patient outcomes data, and usability testing identified areas to improve, such as placement of information and guides to provide context for quality metrics
Several earlier phases informed the development of prototype websites used during the usability testing
Summary
Patients in the US in need of a life-saving organ transplant must complete a long process of medical decisions, evaluations, and potentially long waits for a transplant. A first step is to identify a transplant center to complete an evaluation. This hospital is responsible for confirming if transplantation is appropriate for a patient and will conditionally place the patient on the waiting list for a donor organ. The choice of a center is influenced by many factors, including distance, reputation, insurance coverage, and relationships with doctors.
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