Transparency of Critical Information for Patient Empowerment in eHealth

Abstract: Today Patient Empowerment is gaining ground in the area of health care in modern western societies. This concept is revolutionary, as it potentially alters the balance of power within traditional and apparently solid hierarchical health care structures. The Internet has accelerated the process by providing tools and techniques enabling nearly unlimited access to information and exchange of experiences. However, the benefit from this approach is bilateral, with respect to both care providers and care receivers (consumers). In order to obtain increased efficiency, in an economical as well as medical perspective, the responsibility for proper health and recovery support lies on both sides. Therefore, patients must be prepared for some kind of action. Accordingly, in the role of being a patient, today and in the future, the patient will no longer be “patient”. On the contrary, the patient must be proactive; not stagnate as a passive receiver of care. Nevertheless, as encouraging as this conceptualization is, it also harbours new demands on this “new type of patient”. Consequently, even if the advantages are predominant, the approach will cause friction: not every patient is capable to take action, as the “new empowered patient” should already be healthy and strong to undertake such tasks (a paradox within the concept). The challenges are, by design of Empowering Systems, to decrease or eliminate such difficulties. For a proper understanding of this licentiate thesis, it is essential to notice that the Patient Empowerment phenomenon is highly related to aspects of activity and learning. With reference to this, these empowering requirements should be met by eHealth design especially adapted for this aim. A Model (the KIViC-model) is advocated, which initially has been constructed, and further on evaluated in a Study within the area of congenital heart conditions, to underpin and strengthen design discussions about the importance of information transparency (for patient activity and learning) in health care. Simultaneously, questions concerning visualization of the right information (what is needed), at the right time (when it is needed), and at the right place (where and how it is needed) are highlighted by virtue of the study. Moreover, and maybe of highest importance, questions of the digital divide and security are discussed to underline hazards related to the transformation of one system into another. The paradox within the Patient Empowerment concept is obviously crucial and most likely is context aware Information Systems Design one key that could resolve this. Conclusively, Empowerment Systems should provide the patient with tools to become empowered; despite impeding deficiencies.