Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: A Qualitative Study (Preprint) (original) (raw)
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JMIR Mental Health
Background The privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community. Objective This study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE. Methods Semistructured interviews were conducted with patients at a Canadian academic hospital for addictions...
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Background: Privacy is one of the fundamental rights of patients and their families in the health sector, and the violation of their privacy is a concern among them. Despite the importance of the issue, little research has been conducted to identify the determinant factors of patients' privacy concerns in the health sector. Hence, this research aims to address this issue in the psychiatric hospitals, where the violation of patients' privacy can seriously harm their face. Methods: The study was a descriptive and also a correlational study. Data gathering tool was a questionnaire adopted from published sources. Four hundred questionnaires were distributed in two psychiatric hospitals in Iran using a non-random sampling method, and 384 questionnaires were returned. SmartPLS software was used to analyze the hypotheses. Results: The results of the analysis showed that self-efficacy, ethics, and risk-taking could significantly influence individuals' privacy concerns in health sectors while computer anxiety and trust have no influence on privacy concerns. Conclusion: hospitals should ensure the ethical practices of their personnel. Hospitals should also communicate with the patients their level of control over their sensitive data. Hospitals should also deploy policies to minimize the risk of privacy violation.
Mental health professional perspectives on health data sharing: Mixed methods study
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This study explores behavioral health professionals’ perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.
Mental health service users' perceptions of data sharing and data protection: a qualitative report
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BACKGROUND: To improve health services, social, economic and health data should be shared and linked to create a full narrative of lived experience. Mental health data sharing is often considered a particularly sensitive area.OBJECTIVE: To assess mental health service users’ perceptions regarding the current practice of administrative data-driven research.METHOD: We conducted a focus group using case study scenarios. Themes and subthemes were analysed using qualitative methods.RESULTS: Participants were generally happy for data owners to share their health, social and economic data if the purpose was transparent and if the information would inform and improve health policy and practice. Participants were less keen on sharing data through digital applications.CONCLUSION: This case study informs a data linkage study protocol. Research teams and database owners should strive to educate service users on data protection and create dissent opportunities.
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References http://apt.rcpsych.org/content/8/4/291#BIBL This article cites 0 articles, 0 of which you can access for free at: permissions Reprints/ permissions@rcpsych.ac.uk to To obtain reprints or permission to reproduce material from this paper, please write to this article at You can respond http://apt.rcpsych.org/cgi/eletter-submit/8/4/291 from Downloaded The Royal College of Psychiatrists Published by on November 11, 2013 http://apt.rcpsych.org/ http://apt.rcpsych.org/site/subscriptions/ go to: Adv. Psychiatr. Treat.
Revisiting public health informatics: patient privacy concerns
International Journal of Health Governance
Purpose-Expanding networks of data portals and repositories linked to electronic patient record systems, along with advances in information technology, have created both new opportunities in improving public health and new challenges in protecting patient privacy. The purpose of this paper is to review stakeholder perspectives and provide a framework for promoting implementation of current privacy protection improvement recommendations. Design/methodology/approach-This paper summarizes a workshop session discussion stemming from the 2017 Information Technology and Communication in Health (ITCH) biennial international conference in Victoria, British Columbia, Canada. The perspectives within health service research, journalism, informatics and privacy protection were represented. Findings-Problems underlying gaps in privacy protection in the USA and Canada, along with then-current changes recommended by public health leaders as well as Information and Privacy Commissioners, were identified in a session of the 2015 ITCH conference. During the 2017 conference, a workshop outlined the current situation, identifying ongoing challenges and a lack of significant progress. This paper summarizes that 2017 discussion identifying political climate as the major impediment to progress on this issue. It concludes with a framework to guide the path forward. Originality/value-This paper provides an international perspective to problems, resources and solution pathways with links useful to readers in all countries.
The My Health Record System: Potential to Undermine the Paradigm of Patient Confidentiality?
SSRN Electronic Journal, 2019
Australia's national electronic health records system-known as the 'My Health Record ('MHR') system'-may threaten to undermine the traditional paradigm of patient confidentiality within the therapeutic relationship. Historically, patients have felt comfortable imparting sensitive information to their health practitioners on the understanding that such disclosures are necessary and will be relied on principally for the purpose of treating them. The MHR system potentially facilitates access to patients' health information by individuals and entities beyond the practitioners who are directly providing them with healthcare and, in some circumstances, without the patients' consent. It may also enable patients' health practitioners and their employees to read records that those practitioners did not create or receive in the course of treating the patients and that are irrelevant to their treatment of them. The MHR system could have harmful consequences for individual and public health if patients become unwilling to disclose information to their healthcare providers because they fear it will not remain confidential. In addition to examining the risks of breaches of patient confidentiality in the MHR system, this article considers how the potential benefits of an electronic health records system might be achieved while maintaining patient confidentiality to a significant extent.
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While electronic health records have the potential to vastly improve a patient’s health care, their introduction also raises new and complex issues around security and privacy. There are significant challenges in preserving what patients’ believe to be their privacy and confidentiality, in the context of the accessibility and interoperability of electronic records. Based on a number of expert interviews the paper outlines the institutional measures for security that have been put in place, and highlights the lack of discussion around individual patient privacy requirements. Whilst institutional measures such as legislation, technology and standardised systems have been established, the interpersonal nature of privacy and confidentiality from the patient’s perspective has yet to be addressed.