Structuring the Collection of Unstructured Data: Designing Digital Interfaces for Healthcare Experiences

Abstract

Data-driven medicine increasingly integrates patient data to enhance prevention, diagnosis, and treatment. However, personal experiences that are not captured in clinical records can provide essential insights into individual contexts and needs. This work explores how involving citizens in data collection can support the shift towards patient-centered care, enabling individuals to contribute firsthand knowledge about illness. We introduce a digital interface, inspired by narrative medicine, designed to investigate antibiotic use and identify patterns contributing to antimicrobial resistance. The tool organizes disease-related information while allowing users to emphasize aspects most relevant to their experience. By presenting data in a structured and accessible format, the interface connects personal insight with clinical practice, serving as a shared resource for patients, physicians, and designers to explore correlations, consider alternative treatments, and engage with different patient personas. This approach supports the role of personal experience and interpretation in shaping data and contributing to more inclusive medical knowledge.