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N. Shen



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    OS18 - Minding the Gap in Our Healthcare Policies (ID 34)

    • Event: e-Health 2018 Virtual Meeting
    • Type: Oral Session
    • Track: Clinical Delivery
    • Presentations: 1
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      OS18.04 - Patient Privacy Perceptions in a Digital Mental Healthcare Environment (ID 388)

      N. Shen, Institution of Health Policy, Management and Evaluation, University of Toronto; Toronto/CA

      • Abstract
      • Slides

      Purpose/Objectives: The concepts of privacy and trust are critical for patients with mental health conditions or addictions as effective therapeutic relationships are grounded in the assurance that disclosed information will be held in confidence by the healthcare provider. Without this assurance, individuals may avoid seeking mental health care due to fears of stigmatization if their health records are inappropriately disclosed. Privacy concerns about the appropriate use of mental health records have often overshadowed the valuable characteristics of interoperable health information technology (HIT) — the potential to improve the integration and continuity of care, support clinical and health service research, and empower patients through consumer-based applications. The purpose of this study is to explore the privacy perspective of mental health patients and understand how they feel about the electronic sharing of their records.

      Methodology/Approach: Semi-structured interviews were conducted with outpatients receiving care for mood and anxiety disorders or substance addictions at an Ontario mental health hospital. Participants were recruited using a maximum variation sampling strategy on the following characteristics: perceived health status, disposition to trust, and tech savviness. The interview questions were developed based on the eHealth Trust Model (eHTM), a theory-grounded conceptual framework, to understand the patient views on privacy and trust, the factors that contribute to those views, and the impact of those views. Using Braun and Clarke’s framework for thematic analysis, qualitative themes were identified through iterative rounds of coding using a schema based on the eHTM.

      Finding/Results: Interviews were conducted with 14 patients. Privacy was defined by some as the self-controlled release of information while others equated it to confidentiality. Participants were concerned about their privacy for fears of stigmatization, particularly from employers, insurance companies, and healthcare providers. The term privacy was often used interchangeably with security and linked to a fatalistic belief that there is nothing that can be done about hackers. The concept of trust was grounded in the following themes: competency, credentials, familiarity, and past experiences. Key themes on building trust include: greater accountability, more transparency on how data is used, and more education on patient rights to their information. While patients were not always comfortable with the idea, they were willing to electronically share their records because they saw the individual benefits of providers having complete information and of having online access to their own health records. They were also supportive of sharing their records for clinical and health service research because of the societal benefits.

      Conclusion/Implications/Recommendations: The preliminary analysis of the interviews found that patients were unaware of their health privacy rights and the permitted uses of their health records; however, they supported interoperable HIT because the perceived benefits outweighed privacy risks. With a body of literature mainly comprised of commentary from academics and healthcare providers, this research makes a contribution by gathering first-hand accounts from a vulnerable patient population on how trust can be developed to support Canadian efforts in building interoperable HIT.

      140 Character Summary: This study found that patients with mental health conditions and addictions supported interoperable HIT because the potential benefits outweigh privacy risks.

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