Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study (Preprint)

Abstract

Online patient communities provide new channels for users to access and share medical information. In-depth study of users’ willingness to share information in online patient communities is of great significance for improving the level of information sharing among the patient community and the long-term development of communities.

The aim of this study was to build a model of factors affecting patients’ willingness to share medical information from the perspective of both positive and negative utilities. Specifically, we aimed to determine the influence of online information support and privacy concerns, as well as the moderating effect of disease severity and information sensitivity of different patients on their willingness to share.

Data from 490 users with experience in online patient communities were collected through a questionnaire survey, and structural equations were applied to empirically verify the model hypotheses.

Privacy concerns negatively affected the patients’ willingness to share information (<i>P</i>&lt;.001), whereas online information support positively affected patients’ willingness to share information (<i>P</i>&lt;.001), and information sensitivity negatively moderated the impact of online information support on sharing willingness (<i>P</i>=.01). Disease severity positively moderated the impact of privacy concerns on sharing willingness (<i>P</i>=.05). However, the hypotheses that information sensitivity is a negative moderator and disease severity is a positive moderator of the impact of privacy concerns on sharing willingness could not be supported.

To improve the level of user information sharing, the online patient community should design a safe user registration process, ensure the confidentiality of information, reduce the privacy concerns of users, and accurately identify the information needs of patients to provide personalized support services.