Alberta health care cases highlight future privacy issues

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.

Wider implications
Preliminary figures from the AHW suggest only aboutB three per cent of Albertans are likely to make requests for the masking feature in their EHRs. "But just like disabled access, you don't do it based on numbers, you do it because it's the right thing to do," says Work.

Different provinces are taking different approaches to health care privacy, he says. The Health Information Act requires custodians to consider the expressed wishes of individuals when deciding how much health information to disclose, but doesn't mandate the specifics.

"In Ontario, it's my understanding there's a proposal to mask certain pieces of information in an EHR," says Work. "But it's not as finely-grained in Alberta. Our masking technology puts another layer of security on the entire record, which can only be lifted by seeking consent or by certain health care providers going an extra step if it's necessary."

The idea of "blacklining" portions of an EHR was discussed but dismissed in Alberta in favour of masking the entire record. "There was concern health care providers would be reluctant to rely on EHRs if there are gaps," says Work. "The liability issues are huge. Rather than use an incomplete EHR, doctors would be better off gathering their own information and starting a new record."

While these differences in approach might cause some problems for Canadians seeking treatment outside their home provinces, almost every jurisdiction has made provisions for medical emergencies, he says. "There are over-ride mechanisms that allow health care providers to break the glass on an EHR."

A broader issue is that different approaches to masking by provinces might delay the emergence of a truly pan-Canadian EHR. "Back in the day, the dreams about a national EHR system were huge," he says. "But the notion of a master record with every detail in one place seems to have gone the wayside - and maybe it's a good thing to have a few brakes on how easily information is available."

Emerging issue: The corporatization of health care data
An emerging privacy issue is the use of anonymized information for research by health care organizations, pharmaceuticals and other organizations, says Work. "The mandate of benchmarking agencies like the Canadian Institute of Health Information is to see why an appendectomy costs more in Victoria than St. Johns, for example. And Statistics Canada is doing some major longitudinal health surveys.

They can do research with anonymous information, but for many functions, it's better if it's identified in some way to an individual so tracking can be done over time. I'm not questioning the value of the research but it raises issues."

This type of aggregate data that allows researchers to see broad trends and patterns in populations is the future of health care, says Gudbranson. He believes citizens who opt out of health care systems due to privacy fears are misguided. "There will be some who will say I don't want to be in any network, but the delivery of health care will change radically in a few years. If people opt out, they won't get the benefit of aggregate level care."

Health care will be run in a more corporate fashion in the near future, he predicts. And this is by necessity, as provinces must restrain skyrocketing health care costs in their aging populations. Doctors will likely operate in larger clinics, and perform trend analyses on the thousands of patients managed at the site. "They'll do queries like, 'How are we dealing with our 25 diabetics over time?' Doctors will be able to look at the challenges in their base of clients better," he says.

Privacy fears are largely cultural issues that will diminish over time as people grow to trust health care systems, he says. Many of the security mechanisms in financial systems such as federated identity management are being adapted for health care.

"People will say initially they don't want any of their health care information disclosed," says Gudbranson. "In reality, they don't know who has access to their financial information but their trust in financial systems has been built over many years. People will adjust over time, but the custodians of health care information must be religious about how they handle it."

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