From personal health informatics to digital twins in healthcare

Over the past years, health information platforms have risen where patients can access their personal health records. Electronic health records, lab results, and screenings are available for review and consultation. Medical prescriptions are attached to one’s ID and available at the pharmacy of one’s choice. I would classify this personal medical information as personal health informatics. Additionally, personal informatics, such as lifestyle components, are embedded in our daily lives today, especially in Western and certain Asian countries. These lifestyle components are getting more important in the evaluation of one’s health and potentially play a role during visits with general practitioners or other medical professionals. During the process of this dissertation, healthcare digital twins came into view, especially in areas such as hospital management, clinical trials, and preparing medical interventions. The notion of personalized treatment and personalized medicine leads toward personalized patient care and is becoming a wide area of research. A digital twin refers to a virtual replica of physical objects, processes, people, places, and systems, which is updated in (nearly) real-time with data and can be used for various purposes. Through machine learning and computational models, it can simulate and predict based on historical and current data. While digital twins in healthcare are still in an early stage, early signals show that it could be an important evolution in healthcare, from a professional perspective as well as from a user perspective. I have examined this emergent technology in a home setting, where it can find a role as a health information system. This exploration starts from my vision that personal (health)informatics plays an important role in today's digital healthcare ecosystem. Therefore, my focus is mainly on the patients’ and/or citizens’ perspective, as this technology can have a significant impact on the healthcare systems we know today. My main research question in this thesis was “How do experts, citizens, and patients see the materialization, expectations, and implementation of Digital Twins in (preventive) healthcare? ”This question is explored through 4 lenses: Chapter 2, a survey and in-depth interviews with long-term self-trackers, helped to create an attitudinal typology of long-term self-tracking users. Chapter 3, a Delphi study, revealed a consensus among experts on the potential of healthcare digital twins, emphasizing the use of trial-and-error treatments on the digital twin and the concept of predictive health, which contrasted with the views of non-experts. Chapter 4, non-experts, expressed through in-depth interviews and scenario-based workshops, only wanted an easily accessible and low-threshold qualitative impression of their health for reassurance and their awareness of general health. Chapter 5, by conducting a survey based on the matrix of domination, sheds light on how non-experts experience the tension between the potential for human flourishing and oppression through (self)-surveillance, social sorting, (data) privacy, and (data) ownership in general through a healthcare digital twin.