All together now Digitalisation, data exchange & patient participation in haemophilia care as a use-case for chronic conditions

The increasing prevalence of chronic health conditions poses challenges to the accessibility of health care. Addressing these challenges requires self-management strategies tailored to individuals’ needs, as well as optimized use of digital health tools. This thesis explores how digital health tools, particularly personal health records, affect the quality of care for individuals with chronic conditions, using haemophilia as a use-case.
Haemophilia requires a high degree of self-management, including symptom monitoring, medication administration, and coordination among multiple health care providers. However, the fragmented digital health landscape hinders seamless data exchange between health care providers across institutions, and among various digital health tools and patient portals. This fragmentation leads to inefficiencies, information loss, and suboptimal patient participation in self-management and health care decisions.
In this thesis, we first assessed the quality of haemophilia care and identified (digital) opportunities to improve self-management. Second, we evaluated potential solutions, including personal health records, by systematically reviewing their impact on health outcomes, exploring user requirements, and assessing the feasibility of their implementation within the complex Dutch digital health landscape. Third, we further explored the development and use of essential app features that support disease monitoring and examined the ethical considerations of data sharing.
Ultimately, this thesis provides recommendations for the development and integration of digital health tools, to empower patients, facilitate shared decision-making, and improve coordination of care. These findings contribute to the broader discussion on improving interoperability in health care and ensuring that innovations align with the needs of both patients and health care professionals.