Qanuippitaa? National Inuit Health Survey is an ongoing Inuit-owned and Inuit-determined, survey of Inuit health and wellbeing that will be conducted every five years. The first cycle of data collection began in 2021. The QNIHS will provide an overall picture of the health and wellbeing of Inuit in all regions–what is going well and what areas need to be improved. For the first time, this national survey will bring Inuit from across Inuit Nunangat together in partnership. The QNIHS data collection will take place in every community in the Inuvialuit Settlement Region, Nunavut, Nunavik, and Nunatsiavut.
Qanuippitaa? means “How are we?” This name was used for the 2004 Nunavik Inuit Health Survey and was chosen by all regions for the national survey as it speaks to one of the main goals of the upcoming survey – to provide an overview of the health and wellness of Inuit.
The QNIHS is the only Inuit-controlled health survey program that includes Inuit of all ages from all communities across the four Inuit regions. This program will collect up-to-date information required by communities, Inuit regional organizations and others to better understand Inuit health strengths and challenges at the regional and national levels.
Inuit are asked to take part in many surveys. Some are carried out by the federal government, universities and others. Most surveys are not developed by Inuit. The questions asked are not always relevant to Inuit and do not focus on our priorities. The Qanuippitaa? questions will reflect the feedback received from discussions with Inuit on our health priorities. All of the information will be controlled by Inuit. In addition, one of the goals of the survey is to provide training and resources to help develop the skills required by Inuit to conduct our own surveys on a regular, ongoing basis. This helps ensure that Inuit have greater control over research and that survey and research-related expertise and jobs stay in Inuit communities.
Much information on the health of Inuit is out-of-date and doesn’t accurately reflect the state of Inuit health and wellness. The Qanuippitaa? National Inuit Health Survey will collect current information required by communities, Inuit regional governments and others, to better understand the health challenges that Inuit face. Survey data can provide information to help develop programs in our regions aimed at improving the health of Inuit, our families and communities.
Information collected will be used for many purposes including planning, informing policy decisions, improving programs and developing new ones where required. Subsequent cycles of the QNIHS will take place every five years, allowing Inuit regions, and the people who shape programs, policies and decisions, to see how Inuit health is evolving over time and where resources need to be invested.
In order to protect your rights and privacy, QNIHS fieldworkers will first obtain free, prior and informed consent from you and every participant. What does this mean for you?
- You will be fully informed of the purpose of the research, including risks and potential benefits, as well as the confidential nature of the survey, before it begins.
- If you are a minor, consent is obtained through your parent or guardian. If you are a youth, aged 12 and older, you will also be asked for your assent – and you may refuse to participate even if your parent or guardian consented.
- You have the right to skip a question if you do not want to answer it. You can also stop the survey and revoke your consent at any time.
- Information about specific individuals will not be released or identifiable. The Qanuippitaa? Team has a strong code of ethics to protect individual and collective information.
If you have questions about your rights as a research participant contact the Inuit Qaujisarvingat National Committee, at 613-299-7522 or firstname.lastname@example.org.
The QNIHS is committed to substantial investments within Inuit regions to conduct the survey and to own, manage, analyze, share and use the data. Inuit organizations are designing and delivering the survey, analyzing and sharing the data collected, and will be using the results to make policy and program changes that seek to improve the health and well-being of Inuit.
In each community, a select number of Inuit of different ages will be asked to take part in the survey. People will be chosen randomly from community lists broken down by age and gender. We sample to produce a list of participants who represent all Inuit living in the region. In order for the survey results to accurately represent Inuit in the region, only those randomly chosen can participate. And while participation in the survey is entirely voluntary, by participating, when selected, you help to tell meaningful Inuit stories of our health and well-being and that means future programs and policies impacting Inuit will more accurately reflect Inuit needs and priorities.
The survey is voluntary but it’s very important that those chosen to take part in the survey do so. That way, the information from the survey will be as accurate as possible. Without accurate information that clearly reflects the true health of Inuit and their regions, it is much harder to develop and implement programs and policies aimed at improving the health and wellness of Inuit. The information gathered from every person asked to take part is important to providing a clear snapshot of all Inuit in their region.
Key health priorities have been identified by Inuit. These priorities are being used to determine which questions should be asked. Questions will focus on many topics including food and nutrition, mental wellness, substance use, and culture and identity, among others. Inuit stated that they also wanted some questions asked that will shine the light on the strengths of Inuit and our communities. While data on the health challenges facing Inuit is important to have, some strengths-based questions are required to tell a more balanced story that also reflects the positive things happening among our people and in our communities.
A core set of questions will be asked in all regions at regular points in time, giving Inuit regions the information they need to monitor changes on key issues. However, each region will also have the flexibility to add some questions that address additional priorities. These region-specific questions will ensure that every Inuit region has the evidence they need to address challenges and issues that are unique to their location.
The QNIHS will undergo a rigorous ethics review process before any data collection takes place. An ethics review means that the planned research is formally reviewed against a set of guiding principles or questions that are designed to ensure that the research creates positive impacts and reduces any possible negative impacts on participants. Research ethics are used to protect the participants such as protecting their privacy, ensuring the research does not harm them in any way, ensuring that the research is beneficial to participants and their communities, ensuring they have free, prior and informed consent to participate and maintaining best practices for confidentiality.
Funding for the survey comes from the Federal Government. The department of Indigenous Services Canada has provided $82 million over a 10-year period, in addition to $6 million per year on an ongoing basis, to make the survey permanent into the future.
Surveys are very expensive, especially in remote Inuit communities. For example, it is expensive for survey teams to travel to, and stay, in communities; salary costs for interviewers, community liaisons, nurses and others can add up; and, it’s costly to develop the IT systems needed to collect and store the data. Before government decision-makers, program developers and regional health workers can improve the health of Inuit, they need solid information to help them make decisions. They need to know how healthy Inuit are, what is going well, what contributes to wellness and where improvements are required. Data from this national survey will provide them with evidence they need to develop programs and target interventions. This will directly help communities.
The survey was launched in some Inuit communities in 2021 and will continue to roll out across Inuit Nunangat in 2022 and 2023. The main findings and results from the survey will be ready a few years after that.
Inuit are dedicated to changing the way our data are collected, controlled and shared. The Qanuippitaa? National Inuit Health Survey will be self-determined and Inuit-governed. Partnerships with those who respect an Inuit self-determined process will be sought to ensure that the goal of delivering high-quality data is met. One of the goals of the health survey is to build the infrastructure and skill set required for Inuit to control all facets of survey-taking and research on a long-term, ongoing basis. Meaningful partnerships will help build this capacity through the development of training, information sharing and knowledge exchanges.
Because the Qanuippitaa? National Inuit Health Survey is Inuit-determined and controlled, Inuit will lead all aspects of the survey. Each Inuit region has a steering committee in place to ensure Inuit engagement and participation during the entire survey process. For example: Inuit will be consulted to identify our health data and research priorities; local leaders such as mayors will be engaged to collaborate and promote the survey; local people will act as interviewers, translators and logistics experts; and, Inuit will be trained to analyze and disseminate the information.
The Qanuippitaa? team takes the privacy and confidentiality of participants very seriously. All personal information, such as names and addresses, are stored separately from completed surveys. This means that no one will ever see a participant’s name and their answers together. All members of the Qanuippitaa? team, who have access to survey responses, have signed a Confidentiality Agreement, which protects the privacy of responses. All information provided by participants will be kept confidential and used only for statistical purposes. This means that the survey responses will be grouped together with many other responses and will be presented and reported in overall statistics. One example of a statistic is, “the percentage of Inuit reporting excellent or very good health.”
The regional Inuit organization that is conducting the survey in each region will store the data on a secure server and will have full control over data access and use. Survey data will also be combined with data from the other Inuit regions to create a national-level data set. The national data set will be stored on a secure server at Inuit Tapiriit Kanatami in Ottawa.