Understanding the patient privacy perspective on health information exchange: A systematic review

Health information exchange (HIE), the ability for health information technology (HIT) to share patient data, can improve the efficiency and effectiveness of healthcare; however, this ability may cause patient concern about their ability to control who can access their health records (i.e., privacy). These concerns may affect a patient's candor in their therapeutic patient-provider relationships, thereby undermining their care. While patient privacy concerns are often cited as a barrier to HIT implementation, the patient privacy perspective is not well understood. The purpose of this systematic review is to provide an in-depth exploration of the patient privacy perspective toward HIE, its antecedents, and its outcomes.

A systematic review was conducted on seven health sciences and interdisciplinary databases. Empirical studies that assessed the patient perception of privacy in context of interoperable HIT were included. All included articles were independently screened, extracted, and analyzed by two reviewers. The results were extracted and categorized based on the dimensions outlined in the Antecedent Privacy Concern Outcomes macro-model (APCO).

Of the 1713 unique citations, 59 articles met the inclusion criteria which consisted of 39 (66.1%) quantitative studies, 15 (25.4%) qualitative studies, and 5 (8.5%) mixed methods studies. Fourteen articles (23.7%) were specifically focused on understanding privacy. The patient privacy perspective was operationalized in different ways, with privacy concern being the most common measure (25.4%). The percentage of participants expressing privacy concern ranged from 15% to 74%, depending on the study. Perceived quality of care was associated with lower privacy concerns. Privacy concerns were associated with privacy protective behaviours; however, the perceived benefit of HIE may mitigate the effects of privacy concern.

Using the APCO as a guide, this review found that the patient privacy perspective is dynamic, complex, and still not well understood. There may be an oversimplification of the patient privacy perspective and its impact given the paucity of privacy-focused research. The evidence suggests patient perceptions of healthcare and the value of HIE are important factors in mitigating privacy concerns and its effects. More in-depth privacy studies are required to further illuminate the nuances of the patient perspective and provide policy-makers with greater insights on the privacy barrier.