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Health Canada asks Inuit to surrender health info

Non-Insured Health Benefits form doesn’t specify who will have access to data

MIRIAM HILL

Inuit across Canada may soon be required to fill out a consent form releasing their personal health information as part of the federal Non-Insured Health Benefits program.

While a draft consent form has been released, it is not yet clear who will have access to the information. Dr. Peter Cooney, acting director general of the Non-Insured Health Benefits program in Ottawa, said Health Canada is being very careful with the wording on the form so it does not violate federal privacy legislation.

"We are just in the process of having an ex-privacy commissioner, a privacy consultant, do a privacy impact assessment," he said. "Who can access this information will be clear from the assessment." The list of those with access will then be posted on the Health Canada Web site.

"We know that it will go to the claims processor and that it will then come from the claims processor to Health Canada and there will be very, very limited access by Health Canada officials to that information," he said.

Jose Kusugak, president of Inuit Tapiriit Kanatami, a national organization that represents Inuit, said he certainly wouldn’t sign the consent form as it is written.

"Our problem is it doesn’t really specify who this information is going out to. They actually have words like ‘Sharing information with equipment specialists,’" he said. "We want to know who are these guys? Who are equipment specialists?"

Sharing information

Cooney explained the forms are necessary so a patient’s health information can be shared with a third party responsible for processing a claim for the patient. Inuit and First Nations peoples are insured by First Canadian Health, which is equivalent to a company like Blue Cross, or Great West Life Insurance.

When third-party insurance companies process claims, he said, they need patients’ consent to transmit information, and that usually is given by signing a form. But aboriginal people have never had to sign such a form.

"Up to this, there have been fairly relaxed provincial legislation in this area, but in recent years both provincial and federal legislation has been tightened up considerably and providers are being told you need to have consent to respect an individual’s privacy," Cooney said.

Privacy legislation in a number of provinces says insurers have to do more than assume the person knows their health information will be shared. They must know also that patients are comfortable with the information that is being transferred.

Upon seeing the most recent draft of the consent form, ITK contacted a health lawyer, who raised three key issues: The form is unclear about what information will be shared and who will have access to it; the consent form is written in very high-level language, not easily understandable to a lay person; and some of the terminology remains unclear, such as phrases like "equipment specialists."

The Assembly of First Nations also obtained legal advice and has been working with Health Canada to test the forms in about 14 sites in the South.

"At the moment, we’re collectively working to redraft the consent form and get it into a form that people are comfortable with," Cooney said. "This should be a positive thing. People should know what’s being done with their information."

Failed database

A computer database was set up in 1998-99 allowing pharmacies to share information and discover repeat prescriptions. Privacy concerns prompted the project’s end in spring 1999.

Concerns have been raised this new consent form is in response to native prescription drug abuse in that giving consent allows personal information to be shared between doctors and pharmacists. The concern is that all aboriginals are being painted as potential drug abusers.

Cooney said the concern is valid, but incorrect.

"At the moment, First Nations and Inuit haven’t signed consent and the vast majority of the Canadian population who have third-party plans have signed consent," he said. "With this particular issue, we’re trying to ensure they’re being treated the same as everybody else and there’s no intent to single out drug issues here."

But the sharing of information between health professionals can help ensure that if a patient does have a drug problem, he or she can be identified and receive support and help to address it.

National start

Cooney said Health Canada is setting April as the target date for testing the next draft of the form. Once a "comfort level" has been reached with the consent form, clients will have nine months to sign it.

"If they still don’t want to sign, then we are still giving them alternatives that they can sign just an individual form for consent for reimbursement — to allow the pharmacist to transmit the information on specific items or to allow it to be mailed in by pharmacists because we still need authorization from the patient to look at their health data in First Canadian health," he said.

The forms will be stocked in pharmacies, band offices and community centres, but Kusugak said Health Canada should consider using TV and radio to get the message out as well.

Kusugak said while ITK is neither for nor against the consent form, the organization will continue working with Health Canada to make sure Inuit know exactly what signing this consent form will mean.

"What happens if you give information about your mental state, for example, HIV, if you’ve had an abortion before?" he asked. "That’s pretty sensitive information and you don’t know how it’s going to be used."

Statistics on Inuit and the Arctic are lacking, he said, so data tracking could be positive as long as people know where the information is going and what it will be used for.

"We want to make sure we are comfortable for Inuit to be able to understand everything," he said.

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