Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions

BACKGROUND: Health care providers are driven by greater participation and systemic cost savings irrespective of benefits to individual patients derived from sharing Personal Health Information (PHI). Protecting PHI is a critical issue in the sharing of health care information systems; yet, there is very little literature examining the topic of sharing PHI electronically. A good overview of the regulatory, privacy, and societal barriers to sharing PHI can be found in the 2009 Health Information Technology for Economic and Clinical Health Act. OBJECTIVE: This study investigated the factors that influence individuals’ intentions to share their PHI electronically with health care providers, creating an understanding of how we can represent a patient’s interests more accurately in sharing settings, instead of treating patients like predetermined subjects. Unlike privacy concern and trust, patient activation is a stable trait that is not subject to change in the short term and, thus, is a useful factor in predicting sharing behavior. We apply the extended privacy model in the health information sharing context and adapt this model to include patient activation and issue involvement to predict individuals’ intentions. METHODS: This was a survey-based study with 1600+ participants using the Health Information National Trends Survey (HINTS) data to validate a model through various statistical techniques. The research method included an assessment of both the measurement and structural models with post hoc analysis. RESULTS: We find that privacy concern has the most influence on individuals’ intentions to share. Patient activation, issue involvement, and patient-physician relationship are significant predictors of sharing intention. We contribute to theory by introducing patient activation and issue involvement as proxies for personal interest factors in the health care context. CONCLUSIONS: Overall, this study found that although patients are open to sharing their PHI, they still have concerns over the privacy of their PHI during the sharing process. It is paramount to address this factor to increase information flow and identify how patients can assure that their privacy is protected. The outcome of this study is a set of recommendations for motivating the sharing of PHI. The goal of this research is to increase the health profile of the patients by integrating the testing and diagnoses of various doctors across health care providers and, thus, bring patients closer to the physicians.