SummaryObjectives: To provide a model for ensuring the ethical acceptability of the provisions that characterize the interjurisdictional use of eHealth, telemedicine, and associated modalities of health care delivery that are currently in place. Methods: Following the approach initiated in their Global Protection of Health Data project within the Security in Health Information Systems (SiHIS) working group of the International Medical Informatics Association (IMIA), the authors analyze and evaluate relevant privacy and security approaches that are intended to stem the erosion of patients' trustworthiness in the handling of their sensitive information by health care and informatics professionals in the international context. Results: The authors found that while the majority of guidelines and ethical codes essentially focus on the role and functioning of the institutions that use EHRs and information technologies, little if any attention has been paid to the qualifications of the health informatics professionals (HIPs) who actualize and operate information systems to deal with or address relevant ethical issues. Conclusion: The apparent failure to address this matter indicates that the ethical qualification of HIPs remains an important security issue and that the Global Protection of Health Data project initiated by the SiHIS working group in 2015 should be expanded to develop into an internationally viable method of certification. An initial model to this effect is sketched and discussed.
Purpose -The purpose of this paper is to review stakeholder perspectives and provide a framework for improving governance in health data stewardship. Patients may wish to view their own lab results or clinical records, but others (notably academics, journalists and lawyers) tend to want scores of patient records in their search for patterns or trends. Public Health informatics capabilities are growing in scope and speed as clinical information systems, health information exchange networks and other potential database linkages enable more access to healthcare data. This change facilitates novel service improvements, but also raises new personal privacy protection issues. Design/methodology/approach -This paper summarizes a panel session discussion from the 2015 Information Technology and Communication in Health biennial international conference. The perspectives of health service research, journalism, Public Health informatics and privacy protection were represented. Findings -In North America, an expectation of personal privacy exists as a quasi-constitutional right. Individuals should be allowed to control the amount of information shared about them, and in particular the public expects that details of their personal healthcare data are protected. This is supported by laws, regulations and administrative structures; however, there are fundamental differences between the approaches taken in Canada and in the USA. In both countries, population and Public Health has wide powers to collect data and share it appropriately in order to accomplish a social good. A recent report issued by the British Columbia Information and Privacy Commissioner, and a recent story issued by the Bloomberg News service, highlight ways in which laws and regulations have not kept pace with advances in technology. Changes are needed to enable population and Public Health agencies to protect confidential personal information while still being able to comply with legitimate requests for data by researchers, policy makers and the public at large. Originality/value -Similarities and differences in approach, gaps, current issues and recommendations of several countries were revealed in a conference session. Those concepts and the likelihood of ensuing legislative changes directly impact healthcare organizations' patients and leadership.
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.
Background As a major public health crisis, the novel coronavirus disease 2019 (COVID-19) pandemic demonstrates the urgent need for safe, effective, and evidence-based implementations of digital health. The urgency stems from the frequent tendency to focus attention on seemingly high promising digital health interventions despite being poorly validated in times of crisis. Aim In this paper, we describe a joint call for action to use and leverage evidence-based health informatics as the foundation for the COVID-19 response and public health interventions. Tangible examples are provided for how the working groups and special interest groups of the International Medical Informatics Association (IMIA) are helping to build an evidence-based response to this crisis. Methods Leaders of working and special interest groups of the IMIA, a total of 26 groups, were contacted via e-mail to provide a summary of the scientific-based efforts taken to combat COVID-19 pandemic and participate in the discussion toward the creation of this manuscript. A total of 13 groups participated in this manuscript. Results Various efforts were exerted by members of IMIA including (1) developing evidence-based guidelines for the design and deployment of digital health solutions during COVID-19; (2) surveying clinical informaticians internationally about key digital solutions deployed to combat COVID-19 and the challenges faced when implementing and using them; and (3) offering necessary resources for clinicians about the use of digital tools in clinical practice, education, and research during COVID-19. Discussion Rigor and evidence need to be taken into consideration when designing, implementing, and using digital tools to combat COVID-19 to avoid delays and unforeseen negative consequences. It is paramount to employ a multidisciplinary approach for the development and implementation of digital health tools that have been rapidly deployed in response to the pandemic bearing in mind human factors, ethics, data privacy, and the diversity of context at the local, national, and international levels. The training and capacity building of front-line workers is crucial and must be linked to a clear strategy for evaluation of ongoing experiences.
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