ITK warns of privacy issues in NIHB consent forms

MIRIAM HILL

Inuit Tapiriit Kanatami is advising Inuit not to sign Non-Insured Health Benefits Client Consent Forms, and asking health service providers delivering NIHB in Inuit communities to remove the Health Canada consent information from public view.

ITK says it learned in September 2001 that Health Canada would require written consent from each Inuk accessing the NIHB program by September 2003. Since then, ITK has been working with Health Canada to develop measures to protect the health information of Inuit accessing the program.

Jose Kusugak, the president of ITK, said in a press release this week that even though ITK has been working with Health Canada to improve the wording on the consent form, the organization has learned that the program has already begun in communities across Nunavut.

Onalee Randell, director of health for ITK, said the organization learned the consent forms were in the community health centres when individuals from Nunavut communities contacted her office.

“[The forms] went out to communities around the end of January,” Randell said, “and that was when we got the commitment that [the program] was going to be pulled back.”

Randell said the main problem with the consent forms is that the wording is broad and undefined. As it’s written now, she said, it releases all of a person’s private health information to “pretty much anyone.”

One of ITK’s fears is that information from these records could be used to report, for example, the number of people in a community using HIV medication.

George Radwanski, the federal privacy commissioner, told the organization about six months ago that only individuals — not organizations — can lodge complaints.

Leslie Maclean, Health Canada’s director general of NIHB in First Nations and Inuit health, said that talks regarding the consent forms began with First Nations and Inuit leaders in the spring of 2000.

Maclean said it is true that Health Canada had agreed to develop an Inuit-specific form and communications strategy.

“As part of that we had agreed not to have a communications launch in the Inuit community,” she said. But in the late fall of 2002, Health Canada did release their materials in the northern territories because there are First Nations clients living North of 60.

“We didn’t do any distribution to the Inuit communities specifically because we had agreed not to,” she said.