Should people be able to hide abortions, AIDS, mental illness and other such touchy matters in their medical histories?
The question is moot in a paper-based health care system: the hodge-podge of information out there about an individual is difficult to track and find, since complete medical records don’t exist.
But this won’t be true much longer. Canada Health Infoway is pouring a huge amount of technology into the architecture for a national electronic health record (EHR) system, which will likely be in place in most provinces by 2015, says Wayne Gudbranson, CEO of The Branham Group, an Ottawa-based technology research firm.
Most Canadians assume the privacy of their health care records will be maintained as more and more health care systems are networked and access to their information widens. But how these privacy mechanisms will actually work is often unclear, as most provinces are still in the process of building them.
Alberta at the vanguard
Some first test cases in Alberta highlight some of the privacy issues Canadians will be struggling with in the coming years. “Alberta has one of the most advanced health care systems in the country – so I guess we get to make the mistakes first,” says Frank Work, information and privacy commissioner of Alberta.
In one case, the privacy complaint involved a woman who asked her pharmacist to limit the disclosure of her health information through Alberta Netcare, Alberta’s EHR system. A run-around ensued as the woman took her request to various government entities: The pharmacist said she could not refuse to disclose information but directed her to Alberta Health and Wellness (AHW), who in turn directed her to other information custodians.
“No one really knew how to do it,” says Work. Although Netcare was designed with the facility to “mask”, or hide information unless authorization is obtained, the OIPC’s privacy investigation concluded that the AHW had not communicated the availability of masking to the public nor developed the administrative tools to support it.
“It’s not very useful to develop a masking system and not support its implementation or advise end-users that it’s available to them,” he says.
To correct this gap, AHW has committed to developing an implementation plan and working with the OIPC.
Most Canadians have a high degree of trust in health care providers and systems, says Work. People are fearful of information disclosures to external entities such as employers, police and insurance companies, but are less concerned about medical personnel having full access.
But even within this trusted inner circle of health care providers, the availability of information is sometimes too tempting. In another Albertan first, Work says a health care worker was charged last year for improperly surfing another person’s record.
“It was a love triangle,” he explains. “She was checking up on her boyfriend’s ex-wife. We charged her and she got a $10,000 fine,” he says, adding that investigating this privacy complaint was possible because audit trails are built into the system to track access.
Preliminary figures from the AHW suggest only about