Opening the Black Box of eHealth : A Mixed Methods Approach for the Evaluation of Personal Health Records

With the growing prevalence of chronic diseases (such as type 2 diabetes mellitus, congestive heart failure, or COPD) ageing with one or more chronic diseases is becoming normal. Sustainable solutions are therefore needed to effectuate a transformation in health care delivery and to support the shifts from 1) institutionalized (secondary) care to (primary) home care; 2) acute episodic care to a more continuous chronic care; and 3) the patient as a passive recipient of care to an active patient who is able to self-manage. Technology-based innovations (such as eHealth) are major drivers in this transformation of care delivery. Personal Health Records (PHRs) for example, provide the opportunity for self‐management support and maintaining and/or improving the quality of chronic disease management by engaging patients in their own healthcare. However, despite the potential benefits of PHRs in chronic disease management, recent evidence regarding the effectiveness of PHRs for self‐management remains sparse. Most of the evaluations focus on the effectiveness of PHRs as stand‐alone, patient‐centered technologies in experimental trials. However, the implementation of eHealth is a multi‐level and complex process, and such evaluations do not provide insight into process outcomes or how the use of the different components of the technology has contributed to healthier living, improved wellbeing, or a user’s ability to conduct daily tasks. We call this ‘the black box of eHealth’. Creating and implementing sustainable eHealth technologies thus requires a holistic development and evaluation approach that takes into account the triad of the technology, its users and the context of implementation. This thesis focuses on the evaluation of the implementation of an electronic personal health record (PHR) for patients chronic diseases in a mixed methods approach. The first part of this thesis consists of two more fundamental chapters describing a systematic review to gain more insight into the concept of adherence, and a protocol for the analysis of real-time data regarding the use (log data) of the PHR. The second part of this thesis contains three chapters to gain insight into the actual implementation of e-Vita, the relation between the user and the technology and the influence of the context.