Intellectual Property Law

Canada, England, and Netherlands: Example of E-consent Mechanisms for the U.S. Sensitive Health Data Project

By IBLS Editor

The United States Department of Health and Human Services (?DHHS?) DHHS is engaged in a 10-year plan to develop a national electronic information infrastructure (?NHII?) that will provide authorized health professionals a national access to patients? information across US.  To this end, DHHS in cooperation with the Substance Abuse and Mental Health Services Administration (?SAMHSA?) conducted a study on electronic consent policies and practices on sensitive health information.  Canada, England, and the Netherlands were taken as example for this project given their successful NHII system.  DHHS?s goal was to determine how those countries have managed the e-consent regarding sensitive health data. 

The US NHII project aims to develop an electronic and national health record repository that would allow health care professionals and health organizations access to patients? medical records.   Obviously, and despite its benefits, a NHII system poses questions about the privacy and security of health information, DHHS explains.  DHHS points that a NHII can make available nationwide sensitive information such as HIV/AIDS status, genetic makeup, domestic abuse, substance abuse, and mental health conditions and treatments.  It is clear that this information would be restricted to authorized personnel but its electronic access definitely creates concerns.    To analyze the e-consent problem for the US NHII, DHHS studied the experiences encountered in Canada, England, and the Netherlands. 

The DHHS study concluded that sensitive medical information in a NHII system can be ?masked? when the patient has not consented to its disclosure.  Masking sensitive health information in national electronic health records is a mechanism used in the Netherlands, England and Canada.  Privacy laws in these countries, and in the US, protect patients? privacy on medical records.  Thus, if the patient does not authorize disclosure, the information is ?masked? in the NHII and made unavailable.  Masking takes place through an automatic mechanism created by providers of NHII services which also allows to ?de-masked? the information in a case-by-case basis when the patient authorizes disclosure.  Additionally, NHII systems in these countries offer a ?locking? feature that permits sealing or locking sensitive health data from the view of law enforcement authorities. 

Hence, the DHHS study revealed that NHII systems in Canada, England, and the Netherlands are not exempted from practical problems.  Masking and locking sensitive information works perfectly with coded data. Yet, un-coded data pose inconveniences unless the masking or locking is conducted over the patients? file as a whole.  Likewise, masking data in voluminous records seems to be problematic; it requires more resources and time and may lead to violations of privacy in certain parts of the records. 

Full post as published by IBLS Internet Law Blog on March 10, 2008 (boomark / email).