Legislation paving the way for the collection and sharing of electronic health records will lead to potential patient privacy breaches, say groups opposed to the Bill which will soon get second reading in the B.C. legislature.
The B.C. government has made a $150 million commitment to electronic health records and has already spent three years planning the implementation which will not take full effect for about four years.
But critics are outraged by the "e-health Personal Health and Information Access and Protection of Privacy Act (Bill 24) and warn that B.C. residents could find their private health records circulating on the internet if the system is hacked into, with details stolen, sold or otherwise compromised.
At a news conference Wednesday, the B.C. Freedom of Information and Privacy Association (FIPA), the B.C. Civil Liberties Association, the B.C. Coalition of People with Disabilities and the B.C. Persons With AIDS Society (BCPWA) outlined objections to the legislation. They say it does not contain any guarantees to patients over how their personal information is collected, used and disclosed nor does it permit people to opt out of the whole process it if they want to ensure their records remain strictly confidential.
"We're talking drug histories, genetic information, medical test results, you name it. And once your personal information gets out or on the internet, it's there forever, beyond anyone's control," cautioned Darrell Evans of FIPA.
He said if the legislation passes, it may require a court case to declare it a violation of privacy rights as protected in the Canadian Charter of Rights and Freedoms. But at that point, "the cow would be out of the barn" noted Glyn Townsend, of PCPWA, since a court case would require an actual patient plaintiff whose privacy was already violated.
Health minister George Abbott said in an interview that he disagrees with the critics. Patients will have the ability to make "disclosure directives" to state who can see their records and under what circumstances. But if a patient arrives at a hospital in an unconscious state, it's not feasible for a doctor to ask permission to access such records, Abbott said.
"I think Bill 24 strikes a careful balance around the protection of privacy and the opportunities to access information. We don't want to have a system which makes it remarkably difficult for health professionals to assist patients at the time of their greatest need," he said.
The legislation allows the minister of health to use his discretion over information sharing and it also states that he "may" give patients the ability to put "disclosure directives" on their electronic health records. In that case, patients could mask their health records, and they would only be un-masked through the use of a password.
David Loukidelis, B.C.'s information and privacy commissioner, said in an interview that his understanding is that the provision is not worded in a more definite manner because some older computer systems may not accommodate the technology required to incorporate such directives. So he has written a letter to the government urging it to upgrade all systems to ensure that patients have decision making control over who sees their records. Loukidelis said while he is comfortable with the privacy and security provisions in the legislation, he agrees with Evans and others that patients need that control.
"The system is being designed with privacy and security built in and it also has penalties of up to $200,000 for anyone caught doing unauthorized browsing," he said, adding: "The government has a legal obligation to get this right. But I do agree that these disclosure directives are very important."
Townsend said the northern health region is supposed to be the first to embark on the electronic health record system known as eHealth in November. But he is concerned that patients who are HIV positive and living in small communities will suddenly be "outted" because of the way their lab tests and prescription drug patterns are accessed by everyone from the pharmacy assistant to the lab technology assistant.
"I am saying whoa, slow down. I am shocked at how the legislation reads. We've been railroaded and the government has given itself too much power," said Townsend.
"The legislation, as written, could swipe away any privacy and for people living with HIV, and their livelihoods are dependent on privacy," he added.
The government has said that the purpose of its electronic health record initiative is to improve health care delivery and achieve cost efficiencies. Such records will also be used for health service planning, billing and for public health disease prevention and crisis management.
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Autor(en)/Author(s): Pamela Fayerman
Quelle/Source: The Vancouver Sun, 23.04.2008
