Improving Access to Health Data and Research for First Nations in Manitoba
Indigenous data sovereignty applies to the collection, ownership, and application of data about Indigenous peoples, lands, and resources. In the broadest sense, First Nations communities own their information and therefore, govern their information in the same way that jurisdiction is exercised over First Nations lands. Our goal is to strengthen Manitoba First Nations’ data sovereignty capacity by improving access to, and governance over, First Nations health data and biological samples. This work will be undertaken with the First Nations Health and Social Secretariat of Manitoba (FNHSSM). Since its inception in 2013, FNHSSM has led research initiatives that use First Nations specific data to develop culturally rooted health and social solutions. However, First Nations health data that is held by federal, provincial, or academic institutions remains challenging to access. Additionally, health research that requires the collection of biological samples has been predominately led by external non-Indigenous entities. To overcome these barriers, we will engage with Manitoba First Nations communities and organizations to understand their priorities in health data collection and biological sampling. We will develop processes for communities to regain access to their data and identify gaps in these datasets to better serve community needs. Lastly, we will identify existing repositories (biobanks) containing First Nations biological samples and engage with our region to inform a framework on biological health research. These efforts will support and expand Manitoba First Nations data sovereignty capacity and policies related to the ownership and governance of health data and biological samples. This is foundational for First Nations to lead their health system agendas through evidence- informed decision-making.
