Patient data confidentiality and patient rights

There has been a recent trend to gather and record more comprehensive and more detailed personal medical information in computerized databases. Retrieval and access are much easier from electronic records than from hard copies stored in the archives of care-providing institutions. The Institute of Medicine voiced concern that these developments raised numerous problematic issues, the most disturbing of which is a much more widespread and systematic violation of privacy via what they called 'authorized abuse', i.e. authorized users abusing their access privileges. Other worries stemmed from the sharing of patient information among different entities. Multitudes of organizations receive information about patients' health records, often without their knowledge or consent. These include care providers, insurers, pharmacists, employers, life insurance companies and marketing firms. This article addresses the issues of medical data ownership and some health data-recording problems to which we propose co-ownership and co-documentation as part of the solution. We believe that a cooperative approach will help to maintain greater accuracy of personal medical data, written in language that can be shared and understood by the consumers and not one couched in terminology understandable only to professional personnel and to delegate the power to the patient to decide when and to whom to give authorization for its use by a third party and for research.