To Share or Not to Share? Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information

Abstract: This thesis investigates expectations of and experiences with eHealth services that allow users access to their health information. Although eHealth services are endorsed by many politicians and patients, they are met with strong resistance by health care professionals. Lacking this support hinders the uptake of the full potential of the service, especially with relation to patient participation and empowerment.This research investigates the frames of reference that are constructed by stakeholders in relation to eHealth services, such as direct-to-consumer genetic testing and electronic health records. The results are based on empirical data gathered during an experiment with media informatics students in Germany, and from interviews with physicians in Uppsala, Sweden.The eHealth services in question were framed by the participants of the conducted studies as potentially harmful for its users. The negative expectations were based mainly on a generalized view of patients as not sufficiently knowledgable and hence unable to understand the health information provided by the service. The participants in the reported studies (physicians and students in their role as designers) felt a responsibility to prevent any potential harm for the users of the eHealth service. Due to the framing based on assumed negative consequences for a supposedly vulnerable user group, the participants preferred to advocate against access rather than for patient empowerment and participation. Accessing health information was associated as holding little value for the users.This research enhances the understanding of the elements underlying this skepticism and concern. It shows that a specific view of patients and/or prospective users of an eHealth system can result in incongruent technological frames and value attribution. In line with participatory and value-sensitive design approaches as well as the aim to increase technology acceptance, patients and health care professionals should not only be included in the design process but also engage in joint activities in order to enable reframing.