Secondary Uses of Personal Information Held on National Electronic Health Record Systems: Key Developments, Issues and Concerns
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Centre for Bioethics, Clinical Research Institute of Montreal
The intent of this study is to draw attention to the perspectives, opportunities and concerns that national Electronic Health Records systems (nEHRs) will raise concerning secondary uses of Personal Health Information (PHI). The research is extremely well-documented and up-to-date, with a thorough analysis of secondary use concerns.
The authors propose that, where PHI is used in ways which have little or nothing to do with direct patient care, patient trust in the therapeutic relationship with health care professionals is at stake. Secondary uses may also threaten patient autonomy—if patients are thwarted in the degree of control that can exercise over their PHI—and the fidelity (integrity) of health care professionals. In addition, such uses may raise broad and critically important social, cultural and democratic issues.
Secondary uses of PHI are generally defined as non-direct care uses, and include both health related purposes (such as health care management, public health, medical research) and non-health purposes (such as law enforcement, immigration). The current boundary between primary and secondary uses is challenged by some secondary users, such as medical researchers, who wish to be recognized as primary users and therefore be exempted, for example, from more stringent consent processes.
The authors describe EHRs as patient-centred records that are derived from Electronic Medical Records (EMRs). EHRs are subsets of EMR information, uploaded to central sites and used for a range of purposes related to patient-oriented services and improvements in health care delivery. While some countries, Quebec and some other provinces of Canada are moving ahead with provincial nEHRs, as yet, no nEHRs are fully deployed and operational on any national basis. Thus the research report is a snapshot of an evolving and fluid situation, reflected on the issues connected to future secondary uses of PHI in a nEHR.
Part 1 of the report considers the pan-Canadian EHR system proposed by Canada Health Infoway and addresses three principal aspects of secondary uses of personal health information within national electronic health records systems: the elements in the design of nEHRs that enhance or limit secondary uses of PHI; the governance framework of nEHRs regarding secondary uses of personal health information, including questions relevant to consent; and thirdly, expectations and concerns raised by various stakeholders on secondary uses of PHI stored in nEHRs.
Part 2 is an extremely detailed and well-documented case study of the U.K. National Health Service (NHS) Summary Care record. Over the past 10 years, this evolving system has been the subject of extensive, often fierce, debate over secondary uses of PHI. The report addresses the legal framework for secondary uses of PHI within this system, the types of secondary uses envisioned, and concerns that have emerged about these uses. It also describes a number of proposed “improvements” and requests for clarification raised by various stakeholders.
Part 3 is a summary and synthesis of in-depth conference call interviews conducted in May 2007 with a dozen well-known Canadian experts (names are listed) on issues related to secondary uses of PHI. This includes a detailed discussion of the widening circle of secondary uses, what issues should be emphasized in discussions about nEHRs (for example, the values of privacy, autonomy and dignity), health research as a secondary use (which raised numerous concerns), the challenge of consent, and governance issues.
This document is available in the following language(s):
- This project is not available online. Please contact the funded research organization for more information.
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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