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institutions, practitioners, and other providers, which the committee assumed would be a major function if not a hallmark of HDOs. The second involves the opportunities, risks, and remedies for protecting the privacy and confidentiality of data that do (or may) identify individuals in their role as patients or consumers, not as clinicians or providers. These topics are taken up, respectively, in Chapters 3 and 4. Before that, Chapter 2 describes health databases and HDOs in more detail, discusses their ostensible benefits in general and with respect to a wide range of potential users, and introduces some caveats about how their intrinsic limitations (e.g., poor or incomplete data) must be recognized and overcome.
This report reviews the tremendous promise of regional health data networks for evaluating and improving health care and controlling its administrative costs. While the potential for great benefit to the public may be understood by those in the relevant fields, the potential for harm or lack of fairness in their use may create doubt and fear in many.
Powerful technologies (and electronic technologies are increasingly powerful) can be deliberately or inadvertently misused and cause great harm, in this case primarily in the loss of privacy and confidentiality and the resultant harms this may engender. To gain public support for the vision in this report, and for the public to make best use of the health-related information that will be released, carefully planned strategies must be developed for education about the data networks, about how the data can be used to help the public access and obtain better care, and about what each individual needs to know about the right to privacy and confidentiality and the steps being taken to protect their rights. The responsibility for providing usable public information should be assumed by those who undertake to make the vision of regional data networks become reality.