First Nations Privacy and Electronic Health Record Systems
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University of Victoria
This project involved an examination of First Nations privacy concerns in the context of electronic health record (EHR) initiatives. First Nations approaches to privacy are distinguished by their emphasis on community and group interests. In contrast, both the common law of privacy and international data protection regimes are built on the notion of individual rights. The potentially incommensurability of these two approaches to privacy have significant ramifications for First Nations; while EHRs are a useful tool for supporting holistic approaches to health, the privacy risks inherent in these systems have raised concerns among First Nations stakeholders.
In this project, the researchers provide a long-overdue analysis of the difficulties inherent in this domain. First, they conducted a literature search on communal approaches to privacy. Two reports were written from this survey:
- a report concentrating on sociological aspects of communal privacy, and
- a report detailing the differences between First Nations approaches and those found in common and statutory law.
The latter provided more detail on the potential issues arising when attempting to reconcile these systems. In particular, they noted potential for clashes between individual and collective interests. After holding a symposium on First Nations privacy and EHR systems with First Nations stakeholders, they drafted a third report that used techniques from social requirements engineering to construct agent-oriented models. These models were then used to elicit some key concerns and difficulties. The researchers finished the report by recommending future work to be performed. The research will be of use for a variety of stakeholders, including researchers, public sector agencies and First Nations.
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OPC Funded Project
This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.
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