Taking a Value Perspective on Medical Data Donation Through Participatory Workshops

Abstract

Clinical patient data is a valuable resource for data-driven medical research. However, discussions around personal data privacy highlight the urgency of designing user interfaces that communicate the possibilities and limitations of the data security used when sharing personal health data. To better understand patients’ values regarding medical data sharing, we developed a methodical approach for value-centered participatory workshops. This approach is inspired by two strains, value-sensitive design and reflective design, to reveal values related to a data donation process in the medical field. The data collected in the workshop (the first of three) will be used to derive design recommendations to improve data donation processes.