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

Abstract

BackgroundHealth 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.ObjectiveThis 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.MethodsThis 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.ResultsWe 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.ConclusionsOverall, 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.

Part I: A Quantitative Study of Social Risk Screening Acceptability in Patients and Caregivers

“…The finding that more patients were comfortable with social screening itself than with its documentation in the EHR is consistent with a recent study on social risk screening where participants reported concern with privacy and utilization of social risk data 33 and findings from other work describing patients' unease around sharing health data. 56,57 There are already calls for developing standards to protect social risk data in EHRs, 58 which is increasingly relevant in the context of new efforts to share data across sectors. 59,60 Qualitative findings presented in the companion paper in this supplement augment understanding of participant EHR-related concerns.…”

From self-reliers to expert-dependents: identifying classes based on health-related need for autonomy and need for external control among mobile users

“…Drawing on psychological reactance theory (Brehm, 1966), such privacy concerns might increase mobile health app users' sense of their autonomy being threatened, resulting in increased feelings of reactance and ultimately message rejection, which could be detrimental for health interventions (Rains, 2013). As privacy concerns as such may negatively impact technology use (Abdelhamid et al, 2017), the confirmation-seekers may in fact not be effectively reached by mobile technologies on the long run. Further research may need to focus on providing more thorough insight into the privacy concerns held by (potential) users of mobile health apps, as well as on identifying strategies to overcome concerns to reduce reactance and widen the use and effectiveness of, especially evidence-based, mobile technologies aimed at improving healthy lifestyles, and ultimately health.…”

“…In addition to understanding differences in need for autonomy and need for external control by means of (in)adequate e-health literacy skills, we look at privacy concerns. As mobile technologies often require users to share personal health data to provide personalized health advice, factors that hinder mobile health technology use are often related to informational privacy (e.g., Abdelhamid, Gaia, & Sanders, 2017;Authors, 2018a). Informational privacy refers to the ability to control the aggregation and dissemination of information (Burgoon, 1982).…”

Mental health professionals’ perceptions on patients control of data sharing

“…22 Studies show that trust and communication between the health professional and patient affect data sharing positively 35,28 and may be used to reduce fear of disclosure. While Abdelhamid et al 27 found that trust in providers was the least influential factor in how patients shared data, their study did not include behavioral health data. We found that behavioral health professionals reflected increased patient sharing with increased trust, and results from other studies in behavioral health support such a conclusion.…”

“…19,18,[22][23][24][25][26] A survey-based study of over 1600 participants concluded that patients are most influenced by privacy concerns (significant negative path coefficient βPC = −0.160, p < .001) when deciding whether to share their health information. 27 Other studies showed that trust in providers is the motivating factor to share health data, including highly sensitive information, such as HIV. 26,28 Furthermore, while patient perception of higher cultural sensitivity of their health professionals appear to increase adherence to regimens and overall quality of care, 10,29 information sharing requires a communicative relationship between patients and their health professionals.…”