Patient Participation Behavior in Online Healthcare Communities: Nature, Extent and Influencing Factors

The main purpose of this dissertation is to study patient participation behavior in online healthcare communities (OHCs) in terms of three aspects: quantity and quality of the participation, and the behavior to disclose sensitive health and other personal information during the participation. Our objectives are: to investigate the nature and extent of patient participation behavior on OHCs; to measure the sensitivity of information disclosed by the patients during the participation; to identity factors that influence the participation behavior; and to evaluate how these factors affect the quantity and quality of the participation as well as to evaluate the sensitivity of information disclosed during the participation. We adapt theory of planned behavior to the context of OHCs and identify factors that influence patient participation behavior on OHCs: patient’s personality, online community technology use, anonymity level and health condition. We argue that these factors affect the three aspects of patient participation behavior on OHCs. We test our theoretical model using linear mixed-effect modelling on two OHCs for a stigmatized disease – HIV/AIDS. Patients’ stigmatized health condition is critical in understanding the sensitivity of information that the patients disclose while participating on OHCs. Across the two HIV/AIDS forums, we find that patient personality and health condition are two dominant predictors of the behavior which can be used to predict all three aspects of patient participation behavior. Anonymity is a good predictor of participation quantity in forum 1, while in forum 2 it is a good predictor of participation quality and behavior to disclose sensitive information. While technology use is a good predictor of participation quality in both forums and it is also a good predictor of behavior to disclose sensitive health information in forum 2. Overall, our research contributes to the body of knowledge through: proposing a new approach to measure the sensitivity of information disclosed on OHCs; offering a new perspective on OHCs’ patient behavior through their participation quantity, quality and disclosure of sensitive information; and revealing the relationships between patients’ personality, online community technology use, anonymity, and health condition with their online participation behavior. Our research has practical implications for the government to regulate policies to protect patient’s sensitive information disclosed online, and for OHCs service providers to better manage the experience of their members with the goal of driving higher levels of information sharing which is critical to the success of any online communities.