NTI slams handling of 2007-08 Inuit health survey

A health worker takes a blood sample from a Kugluktuk woman during the 2008 leg of the Qanuippitali Inuit health survey. (FILE PHOTO)

Natan Obed, director of social and cultural development for Nunavut Tunngavik Inc., led the Feb. 4 release of the organization’s Annual Report on the State of Inuit Culture and Society, which focuses on the landmark Inuit Health Survey of 2007-2008. (PHOTO BY PETER VARGA)

The Qanuippitali Inuit Health Survey of 2007-2008 is the most complete survey ever done on the Inuit people of Canada, but Nunavut Tunngavik Inc. says its results have not benefited the people who need it most: the Inuit of Nunavut.

Nunavut Tunngavik’s Annual Report on the State of Inuit Culture and Society, released Feb. 4, focuses on the landmark survey, which collected information on 1,923 Inuit in Nunavut’s 25 communities.

Funded by the federal government, the $10.6-million survey’s purpose was to gather information about the health status of Inuit.

That information, and research projects connected to it, was supposed to go back to territorial and other governments to inform policy-making.

But that hasn’t happened.

NTI’s report found that “its results have generally been disseminated to an academic audience in isolated fragments rather than showing how the results fit into a larger picture of Inuit health.”

Because of this, NTI aims to get the original purpose of the Inuit health survey back on track with its annual report, which includes a list of recommendations.

The organization, which safeguards the Nunavut land claims agreement that created Nunavut, will table the report this year in the Nunavut legislative assembly and the House of Commons.

“Inuit have been researched before, but Inuit have not played a role in how the research is being conducted,” Cathy Towtongie, president of NTI, said via teleconference when the report was released in Iqaluit.

“When the research is done, it’s documented, but it has no meaning to the Inuit.”

NTI was part of a steering committee that was supposed to guide the project from start to finish.

The Nunavut Steering Committee, as it was called, also included the Government of Nunavut and the Nunavut Association of Municipalities, which worked with researchers from McGill University and the University of Toronto.

According to the NTI report, McGill had “exclusive access and control” of IHS data until August 2012, when it shared the information with Nunavut’s chief medical officer.

“The major concern for us is that our academic partners [McGill University] would use the information, and the data sets for their own academic purposes,” Natan Obed, director of social and cultural development for NTI, said at the organization’s offices in Iqaluit where he and Towtongie released the report.

“We didn’t ever agree to have a purely academic exercise about particular populations and their health outcomes,” he said. “We did this to improve the lives of Inuit.”

Information from the Inuit Health Survey (IHS) was supposed to provide “a new understanding” for Nunavut policy-makers, “especially for the health system,” Obed said.

“And especially for the individuals and the Inuit communities who took part, about where they are at, at a point in time,” he added. “So if we don’t have a complete set of findings, then we have an incomplete ability to change the lives of Inuit in the territory.”

The disconnect with academic researchers began when the Nunavut Association of Municipalities dropped out of the steering committee, Obed said.

IN 2008, the NAM imploded after its ex-executive director, Lynda Gunn, resigned and the organization disappeared into a leadership vacuum that lasted from then until well past 2011 and 2012.

Meanwhile, the only information from the survey to become known to the public were contained in academic papers presented in July 2009 at the International Congress of Circumpolar Health in Yellowknife.

Nunatsiaq News was the only news organization to cover those presentations.

One involved a study, based on Qanuippitali data, that found half of Nunavut’s children aged three to five don’t get enough food to eat.

Another found that seven of 10 Inuit families in Nunavut run out of food over the course of a year.

The NTI report however, says that steering committee members who were supposed to oversee the study did not have a clear agreement on how to guide and approve research.

This “contributed to a lack of transparency and consistency when it came to NTI review and approval of publications and presentations on IHS findings,” the report says.

In the end, academic researchers used information from the survey to publish no fewer than 13 research papers without “consistently” consulting with NTI and other steering committee members, the report says.

NTI’s report refers to the research activity as “ethical oversights,” which are “disappointing given national guidelines put in place to protect aboriginal communities from unethical research practices.”

To overcome this, NTI promises to call for greater control over research in Nunavut, including a need for research agreements with academics and compliance with ethical norms for research on “human beings,” Obed said.

The NTI report makes several recommendations to do this, including:

• To adopt ownership, control, access and possession, or “OCAP” principles to guide research that uses information from the IHS and similar future surveys.

• Strengthen NTI’s role in screening all social sciences and health research in Nunavut, which is licensed by the Nunavut Research Institute.

• Adapt the Alaska Native Tribal Health Consortium model for use in health research in Nunavut.

The incentive of NTI’s annual report is to make the health survey “relevant to Inuit and policy-makers,” Towtongie said, so that it will assist decision-making on all matters related to health policy in Nunavut.

“It outlines very clearly the role that Inuit can expect to play in future research affecting our communities,” she said. “But more importantly, that Inuit have a more authoritative role in research, so that it will help make it respectful, relevant and meaningful to our lives.”

Click on this link to download a PDF version of the NTI report.

With files from Jim Bell