Early communication is key - Designing a new communication tool to immediately empower people with psychogenic nonepileptic seizures.

INTRODUCTION: Patient empowerment and shared decision-making has been increasingly recognized as key factors for a favorable prognosis. This is particularly true in complex brain disorders such as psychogenic nonepileptic seizures (PNES) which go along with several challenges. People with PNES (PW-PNES) often feel lost in the healthcare system. Early clear communication is one of the few favorable prognostic variables. Our goal was to design a new ultrashort user-friendly communication tool allowing immediate patient empowerment. METHODS: We conceptualized a design thinking process with patient engagement of PW-PNES. Together with a larger group of PW-PNES, we developed a comprehensive user-friendly 1-page document summarizing the key features of PNES. We applied document engineering (DE) as a cognitive science-based new methodology. Document engineering is well established in the aviation, oil, and mining industries and measurably reduces comprehension and performance errors. RESULTS: The design thinking process encompassed 5 phases (empathize, ideate, define, prototype, and test). A prototype of a 1-page document, the 1-Pager-PNES, was created which contained the essential 7 domains organized in a simple structure such as a promise-question-answer (PQA) format. Information was kept poignant, complete, easy-to-read integrating cognitive principles to optimize navigation. The prototype "1-Pager-PNES" was subsequently tested in a 7-member focus group. All patients expressed significant improvement in understanding their disease and felt immediately empowered. Implementing their specific feedbacks, reiterative testing, and involving PNES experts resulted in the final version of the "1-Pager-PNES". CONCLUSION: A promising new communication tool reduced to 1-page only is introduced which improves patient guidance and enables better coping mechanisms with this complex disease. The patient/user is empowered quickly through finding answers to pressing questions. Our study is unique for three reasons: 1) it engaged patients in the developing process, 2) it produced a tool for immediate communication for PW-PNES, which follows principles of human behavior and cognitive science, and 3) it used cross-industry thinking. Despite all limitations, we consider our small pilot study an inspiration for future studies with focus on patient empowerment through user-friendly documents.

Document-Engineering Methodology in Health Care: An Innovative Behavioral Science-Based Approach to Improve Patient Empowerment.

Engaging patients in their treatment and making them experts of their condition has been identified as a high priority across many medical disciplines. Patient empowerment claims to improve compliance, patient safety, and disease outcome. Patient empowerment may help the patient in shared decision making and in becoming an informed partner of the health care professional. We consider patient empowerment to be in jeopardy if written medical information for patients is too complex and confusing. We introduce document-engineering methodology (DEM) as a new tool for the health care industry. DEM tries to implement principles of cognitive science and neuroscience-based concepts of reading and comprehension. It follows the most recent document design techniques. DEM has been used in the aviation, mining, and oil industries. In these very industries, DEM was integrated to improve user performance, prevent harm, and increase safety. We postulate that DEM, applied to written documents in health care, will help patients to quickly navigate through complex written information and thereby enable them to better comprehend the essence of the medical information. DEM aims to empower the patient and help start an informed conversation with their health care professional. The ultimate goals of DEM are to increase adherence and compliance, leading to improved outcomes. Our approach is innovative, as we apply our learning from other industries to health care; we call this cross-industry innovation. In this manuscript, we provide illustrative examples of DEM in three frequent clinical scenarios: (1) explaining a complex diagnosis for the first time, (2) understanding medical leaflet information, and (3) exploring cannabis-based medicine. There is an urgent need to test DEM in larger clinical cohorts and for careful proof-of-concept studies, regarding patient and stakeholder engagement, to be conducted.