Fostering ethical reflection on health data research through co-design: A pilot study

Abstract

Health research ethics training is highly variable, with some researchers receiving little to none, which is why ethical frameworks represent critical tools for ethical deliberation and guiding responsible practice. However, these documents' voluntary and abstract nature can leave health researchers seeking more operationalised guidance, such as in the form of checklists, even though this approach does not support reflection on the meaning of principles nor their implications. In search of more reflective and participatory practices in a pandemic context with distance learning, this study explored whether co-design could support engagement and reflection on ethical principles amongst early-stage health researchers. In a pilot test using the Swiss Personalized Health Network's ethical framework for Responsible Usage of Personal Data in Health Research as a case study, we engaged health researchers to design visuals of four ethical principles. In two online workshops, participants (N = 10, N = 8) completed activities such as individual reflection, collaborative ideation, sketching, prototyping, discussion, and feedback. Our analysis shows that the co-design process helped foster in-depth engagement and reflection on the meaning and relevance of the SPHN ethical principles. Participants reported enjoying the experience, and most felt that visuals could motivate engagement with ethical frameworks. This study demonstrates the feasibility of a participatory, design-oriented approach to promote engagement with research ethics among early-career health researchers and highlights key challenges and lessons learned. In doing so, it lays the foundation for future research to investigate the impact of design-oriented, participatory learning to foster reflection and deliberation in ethics education.