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Confidentiality Concerns

Case Aims: To illustrate that advances in medical information systems may not be matched by sufficient attention to data protection

In the USA PHRs are becoming increasingly popular among consumers. These PHRs are designed to help consumers record, store and transmit their medical information to any doctor or hospital, as well as for online health risk assessments and individual wellness programme planning. The first large-scale, online PHR service was started in 1999 by WebMD. Since then a number of other companies have begun to offer online PHRs, including FollowMe, Laxor and Medem. Some of these PHRs are designed not only to store information entered by the individual but also to incorporate information provided directly by doctors, hospitals, laboratories and other sources of medical information. PHRs are being made available by doctors' hospitals, health insurers, drug companies, employers and a variety of other public, private and non-profit organisations (Brown 1997)

PHRs are different from EMRs. The latter are typically implemented by healthcare entities as electronic repositories of clinical information generated by clinicians in the course of treating and caring for patients within their respective organisations. Access to the EMR is usually restricted to the doctors, nurses and other members of the workforce of the healthcare entity that owns the system. Although many EMRs are Web enabled, it is usually not the vehicle by which protected health information is shared with providers from other healthcare organisations or with patients.

The Office of the National Coordinator for Health Information Technology (2006) in America funded research to examine the privacy policies and pro(continued)

cedures of 30 currently available PHR providers. Their conclusions indicated a number of concerns including the following:

  • 1. The transparency of secondary use of data could be greatly improved.
  • 2. Data disposal rules and regulations are ill-defined, especially for closed accounts and vendors that go out of business.
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