Building Bridges and Creating Connections: Patient-Research Engagement and Its Implications for Taste and Smell Disorders.

In June 2023, The Smell and Taste Association of North America (STANA) and the Association of Chemoreception Sciences (AChemS) joined in partnership to lead a virtual event designed to foster connection and mutual understanding between individuals affected by taste and smell disorders, their advocates, and researchers. The goal was to understand and improve the accessibility and impact of research on these disorders. Key themes highlighted the importance of advocacy, the role of inclusive research, and the need for more understandable and accessible information about these disorders and their research findings. We utilized pre- and post-event surveys to learn about the event's effectiveness, understand the attendees' perceptions, and identify areas for future improvement. The event successfully engaged attendees and met many of their expectations. However, areas for improvement were identified, including the need for a greater focus on taste disorders, improved accessibility of research study information, and more interactive event formats. To address these areas, we propose some recommendations, such as organizing targeted events focusing on specific taste and smell deficits, diversifying audience reach to capture the multitude of patient lived experiences, and creating educational series and additional outreach initiatives. We also suggest translating research findings into accessible formats, fostering stakeholder involvement in research, and organizing outreach sessions at the national meeting. Implementing these recommendations could enhance the impact of AChemS on understanding, treating, and communicating taste and smell disorders.