Nunavut government works on new model for sharing tuberculosis information

Nunavut's health department says it's working on a new model for sharing information about tuberculosis cases across the territory. It will do this by providing breakdowns for the age and gender of patients, the director of policy and planning for the Department of Health told MLAs on Tuesday. 

"In terms of information sharing around tuberculosis, we are looking at other models," Linnea Ingebrigston said. "It's not a closed door on information sharing related to TB, we are looking at sharing information by gender and age ranges in the near future." 

Two days of hearings wrapped up in Iqaluit Tuesday where MLAs reviewed the privacy commissioner's annual report. The report outlines shortcomings by the government on how it shares information. One of the recommendations is for the government to be more specific on how it shares tuberculosis information. 

The department is also looking at how Nunavik publicizes tuberculosis cases as an example, Ingebrigston said. One way that region works with communities is by sharing infection rates with community leaders, even if information isn't widely published. 

But, to protect patient privacy and cut down on stigmatization surrounding tuberculosis, the department says it remains unwilling to regularly release case numbers by community. The government does release information on case numbers for ongoing outbreaks, like the one Pangnirtung residents are experiencing now. 

In a separate report earlier this year privacy commissioner Graham Steele said there is no legal reason that can be justified through existing information sharing legislation to withhold tuberculosis case numbers by community when requested. The exception is when a community has five cases or fewer. 

Steele says the health department is making up rules for how to follow Nunavut's information laws. 

"Meanwhile, nobody really knows what's going on in the different communities with tuberculosis, and surely the people of Nunavut deserve to be trusted with that information so that they can make judgments about what they need to do and what their government needs to do," he told CBC.

Arviat South MLA Joe Savikataaq says if members have more data, they can keep the government accountable. 

"Inuit have the highest per capita of TB infections within Canada. So the main goal should be that we should be treating and in order to treat it properly, I think there has to be statistics and numbers out there so that we know how serious the problem is," Savikataaq told CBC.

Health-specific information legislation needed, commissioner says

New health-specific information and privacy legislation would help with these conversations, Steele said. Other jurisdictions already have this kind of law. He says Nunavut is over a decade behind.

Iqaluit-Tasiluk MLA and former health minister George Hickes wants regular members to keep pressure on the health department to create that legislation during this government.

"It has been a long time and I acknowledge that there needs to be a little bit more active work. I think it would alleviate a lot of these concerns," he said. "We can take existing legislation that is quite strong from other jurisdictions and customize it to Nunavut's needs and realities."  

A modern law could include rules for using technology to share information. Commissioner Steele is currently is doing a review of internal government networks departments use to share information. Steele says there were countless breaches of privacy on those networks, which were also used by the health department. 

"People could see all kinds of very confidential information that they should not have been able to see," he said. 

Steele plans to release that report in the new year.