Abstract
Participatory medicine and e-health help to promote health literacy among non-medical professionals. Users of e-health systems actively participate in a patient social network system (PSNS) to share health information and experiences with other users with similar health conditions. Users’ activities provide valuable healthcare resources to develop effective participatory medicine between patients, caregivers, and medical professionals. This study aims to investigate the factors of patients’ engagement in a PSNS by integrating and modifying an existing behavioral model and information system model (i.e., affective events theory (AET) and self-determination theory (SDT)). The AET is used to model the structure, the affective aspects of the driven behavior, and actual affective manifestation. The SDT is used to model interest and its relations with behavior. The data analysis and model testing are based on structural equation modeling, using responses from 428 users. The results indicate that interest and empathy promote users’ engagement in a PSNS. The findings from this study suggest recommendations to further promote users’ participation in a PSNS from the sociotechnical perspective, which include sensitizing and constructive engagement features. Furthermore, the data generated from a user’s participation in a PSNS could contribute to the study of clinical manifestations of disease, especially an emerging disease.
Highlights
Participatory medicine and e-health have encouraged non-medical professionals to participate in healthcare activities or to lead a healthier lifestyle
In addition to health information seeking on the Internet, users actively participated in a patient social network system (PSNS), a virtual platform for informal health communities where members can find others with similar health issues [13] and exchange detailed data about symptoms, treatments, and experiences related to specific diseases [14]
Some examples of PSNSs are PatientsLikeMe, Ben’s Friends, Society for Participatory Medicine, and BrainTalk Communities for neurological disease
Summary
Participatory medicine and e-health have encouraged non-medical professionals to participate in healthcare activities or to lead a healthier lifestyle. Another study within the Australian region suggested that 80% of the Internet users sought for information about health online [2]. Other studies have examined health information seeking behavior based on medical and physiological perspectives [5,6], consumer’s characteristics [7,8,9,10], and social contexts [11,12]. In addition to health information seeking on the Internet, users actively participated in a patient social network system (PSNS), a virtual platform for informal health communities where members can find others with similar health issues [13] and exchange detailed data about symptoms, treatments, and experiences related to specific diseases [14]. Patients with chronic diseases were reported to be more active in engaging in PSNSs [15,16]
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