Preserving lived experience in a datafied future
A Speculative Design Research Project Exploring the Future of Digital Twins in Psychiatric Care, Using PTSD as a Case Study
D.A. den Besten (TU Delft - Industrial Design Engineering)
N. Cila – Mentor (TU Delft - Human Technology Relations)
K. Bogdanova – Graduation committee member (TU Delft - Human Technology Relations)
Peter Klumpenaar – Graduation committee member (GGZ Noord-Holland Noord, Alkmaar)
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Abstract
This thesis explores how digital twin technology might introduce a trade-off between datafication and lived, intuitive experience in psychiatric healthcare for people with Post-Traumatic Stress Disorder (PTSD). A digital twin refers to a virtual simulation of a person’s behaviour and emotional states that is constructed through continuous data collection. Such systems promise more personalised and autonomous forms of care, yet they also raise ethical, relational, and interactional challenges. For people with PTSD, the ability to trust their own bodily signals is often disrupted. A digital twin could create a sense of enhanced self-understanding, yet at the same time risk undermining one’s relationship with lived experience.
Using speculative design research, this project examined how people with PTSD interpret and emotionally respond to potential technological futures. Through a combination of contextual immersion, expert interviews, and iterative prototyping, a final speculative design was developed that materialised the tension between analytical feedback and subjective reflection. This tension was expressed through an interactive experience that alternated between different modes of feedback, ranging from quantitative data to narrative and interpretive forms. The prototype was then tested with people with PTSD to ensure that their lived experiences were meaningfully translated. Their engagement revealed personal values related to how different forms of feedback shaped their sense of understanding and agency.
The findings show that the trade-off between datafication and lived experience is not an opposition of forces, but a productive tension that can be intentionally designed. When analytical insights are intertwined with guided personal reflection, digital twins can complement psychiatric care by creating conditions that support self-understanding, emotional safety, and interpretive agency. The study further revealed that the framing of feedback from the digital twin to the user strongly shapes whether the technology feels supportive or intrusive, and how trust in data is formed.
Finally, the study offers a set of recommendations for designers of future digital twin technologies, emphasising the need to balance predictive accuracy with reflective engagement that is sensitive to the richness of lived experience. In doing so, it positions speculative design as a method for anticipating the experiential and relational futures of psychiatric technologies before they are built.