Paving the way for transparency : How eHealth technology can change boundaries in healthcare

Abstract: The digitalization that currently is taking place in healthcare raises questions about how this development, with visions of more patient participation and patient empowerment, changes this sector and what role eHealth can play in these changes. The term civic health technologies (Invånartjänster) is used in Sweden to describe eHealth in the healthcare sector that is developed and deployed by the authorities for the citizens. Open Notes (Journalen) is a civic health technology that enables patients to access their electronic health records online. The system is an innovation in healthcare that changes when and where patients can read the content of their health records. Psychiatric care was initially exempt from the service because the content of the records was considered too sensitive and the psychiatric patients too vulnerable. In October 2015, Region Skåne became the first region in Sweden to include adult psychiatry in the service. It is thus of interest to gain more knowledge about how the healthcare professionals in this setting describe how their work changed when the eHealth solution, aimed to support and empower patients, was implemented in their practice. The overall aim of the thesis is to explore and analyze how the transparency that is afforded to patients by eHealth technology changes the boundaries in healthcare. By analyzing these issues with the support of a theoretical framework, we can increase our knowledge of how the transparency afforded by the materiality of technologies changes the boundaries around the work of healthcare professionals. The thesis presents three studies that have a mixed methods approach. The results show that although civic health technologies, such as the Open Notes service, are aimed at the patients, they also change healthcare practice and the relations between professionals and patients. These changes are reported regardless of whether the patient uses the service or not. The idea of Open Notes is to create a transparent healthcare practice that empowers patients and enables them to be more involved in their care. The results show that the professionals do not experience that all of their patients in adult psychiatry meet these expectations. This indicates that governed individual real-time transparency may not always be the best choice either for the patients or for the healthcare professionals’ work. The work of healthcare professions, by tradition, is surrounded by boundaries. The results show that key actors behind the Open Notes service, through what is referred to as configurational boundary work, have the power to transform these boundaries. Such a development could result in actions from the professions to regain control over the boundaries, referred to as competitive boundary work. The professionals reported that they had changed their behavior and conducted competitive boundary work in order to deal with the transparency in the Open Notes service because it makes their professional work visible. The professionals did this primarily to protect the patients and their relatives, and secondly to protect themselves. The results from adult psychiatry show that doctors and psychologists in many cases seem more negative to the visibility than other groups of healthcare professionals. The materiality of Open Notes thus seems to challenge professional values, and the reactions are strongest from these two professions. Their primary reason for being sceptical to the transparency that is afforded by Open Notes is that they believe that it may not always be the best and safest solution for all of their patients.