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Nelson Shen

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  • OS11 - Diversity in Implementation (ID 17)

    • Event: e-Health 2017 Virtual Meeting
    • Type: Oral Session
    • Track: Clinical and Executive
    • Presentations: 1
    • Coordinates: 6/06/2017, 10:30 AM - 12:00 PM, Room 205D
    • OS11.02 - Patient Perceptions of Health Information Exchange Privacy: A Systematic Review (ID 274)

      Nelson Shen, Institute of Health Policy, Management and Evaluation, University of Toronto; Toronto/CA

      • Abstract
      • Slides

      Purpose/Objectives: The privacy discourse often reflects the views of healthcare providers and academic commentators, but not patients. The patient perspective on privacy is not well understood, yet patient privacy concern is often cited as a barrier to the adoption of health information technology (HIT). The purpose of this systematic review is to characterize the patient perception of health information exchange (HIE) privacy and identify the drivers and implications of patient privacy concerns.

      Methodology/Approach: A systematic review was conducted on seven health sciences and interdisciplinary databases. To be included, the study must: assess the patient perception of privacy in context of HIE or interoperable health HIT; be a primary study with a quantitative approach; and be conducted after 2004. All articles were independently screened and extracted by two reviewers. The results were extracted and categorized based on the dimensions outlined in the Antecedent Privacy Concern Outcomes framework.

      Finding/Results: Thirty-four of 1713 citations met the inclusion criteria. Ten articles focused specifically on privacy. Percentage concerned about privacy was the most commonly reported measure (n=11) with results ranging from 15% to 78%. A majority of participants in three studies (50%, 64%, 75%) agreed that the benefits of HIE outweigh privacy risks (i.e., privacy calculus). Privacy calculus was validated in four studies. Privacy concern was a dependent variable in 13 studies. There was inconclusive evidence on how, or if, demographics was associated with privacy concerns. There was no research on the effects of privacy experiences and privacy knowledge. One study found that experience with HIE is associated with reduced concerns, while the another found the opposite; however, the participants from the latter study wanted continued access despite the increased concerns. Awareness of provider use of HIT had no effect on concerns. Increased information control, positive attitude towards HIE, satisfaction with healthcare, and trust in healthcare providers are other antecedent factors associated with less privacy concerns. Privacy concern was an independent variable in 18 studies. Those with privacy concerns were less likely to see value in HIE, use HIT, and trust the healthcare system. Moreover, they were less willing to share their information, and more likely to engage in protective behaviours. There is inconclusive evidence on whether privacy concerns reduce an individual’s intention to use HIT and support HIE as some studies reported no effect.

      Conclusion/Implication/Recommendations: Patient privacy concern is not absolute as it varied depending on study and context. Despite evidence positioning privacy concerns as a barrier to HIE acceptance, these studies should be interpreted with caution as a vast majority of these studies are hypothetical and little context was provided on how knowledgeable participants were of HIE and its safegaurds. The privacy calculus highlights the importance of these factors as knowledge of benefits could offset the effects of privacy concerns. Future research should place greater emphasis on understanding the effects of these under-explored antecedents (e.g., knowledge, attitudes, trust, self-efficacy, etc) on privacy concerns. Furthermore, policy efforts should begin framing HIE as a public good and focus on raising awareness and building trust through public engagement initiatives.

      140 Character Summary: Patient privacy concern is contextual. Research and policy should focus on how antecendent factors (i.e., privacy calculus) can offset effects of privacy concern.

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