Sharing intention of electronic health records in online health communities: Patients’ behavioral decisions in the context of privacy protection measures

Abstract

Online health communities (OHCs) have become more important to people’s daily lives on the foundation of the voluntary sharing of electronic health records (EHRs). However, no in-depth investigation has been conducted concerning the influence of the perceptions of privacy protection among patients on their willingness to share EHRs. To fill the knowledge gap, by combining and modifying the theory of planned behavior (TPB) and the health belief model in the context of the privacy protection models implemented by OHCs, an empirical research method using a questionnaire approach is conducted to validate the hypotheses. The results indicate that the more positive a patient’s attitude toward medical information sharing behavior is, the higher that patient’s level of perceived behavioral control; in addition, the greater the social rewards obtained from this process, the more willing the patient is to share his or her EHRs after privacy protection measures are implemented by OHCs. Meanwhile, the effects of past positive experiences and disease severity have also been tested. The findings of this study can be used to promote patients’ full participation in OHCs from a privacy perspective and offer theoretical and practical suggestions to promote the development of OHCs.

Health data sharing attitudes towards primary and secondary use of data: a systematic review

“…Of them, 67 articles were excluded due to following reasons: 32 reported no outcomes of interest, 18 reported only qualitative data, 6 were deemed to be of unsuitable publication type, 5 had no full-text available, 3 focused on views of populations not of interest, and 3 were published in a language other than English. Initially, 15 articles seemed to meet the inclusion criteria, however, after tabulating their information they were excluded as well: 10 reported HD sharing with recipients that were not of interest, 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 4 reported wrong HD type or biospecimen only, 36 , 37 , 38 , 39 and 1 was retracted. 40 This left 116 articles to be included in our qualitative summary, yielding a total of 228,501 participants ( Fig.…”