June 08, 2007

Serial Murder Promotes Transparency and Integrity

Beauty has no age limitThis week on CNE I blogged about how the Shipman murders have promoted patient access to their journals. It is rather strange that it took something like the Shipman affair to help start something as obvious as web-access to one's medical files.

Still, the Swedish Data Inspection Board stopped a Swedish trial back in 2004 using a law originally intended to prevent breaches of privacy (link in Swedish) - apparently having access to one's own files would risk one's integrity (the board argued that the law ought to be changed, but in that case why sue in the first place? - Swedish computer law is filled with situations where the praxis is not to enforce ill-fitting laws).

Integrity is about owning one's information in the sense of having control of how it is used, the right to benefits from the information, a right to transfer or sell the information and a right to exclude others from it. Clearly having access to it in the first place is cruicial for the other rights to have any meaning. Up until recently patient information belonged to the patient in name only, and was in practice the property of the health care system. Now partient intellectual property rights are being strengthened. What remains is to make them flexible: under current laws it seems that many of the rights above are not possible to exercise. What we need is some form of creative commons licencing of medical information that would enable both patient ownership yet also beneficial uses like participation in scientific research and transfer to third party treatment.

It might be useful to develop an ontology for the creative commons to enable automatic processing of CC-information. If every file has to be interpreted by a human it would just be equivalent to strong copyright.

Posted by Anders3 at June 8, 2007 12:21 AM