The Digital Health Initiative: Our Data Indigenous App
In February 2021, Kitatipithitamak Mithwayawin, a collection of Indigenous-led countermeasures to COVID-19, launched the COVID-19 Indigenous App, considered to be the first of its kind. Four of its developers presented at the Kana Wain Dida International Gathering to review the app’s goals and features.
Before the pandemic was officially declared, Dr. Myrle Ballard, Dr. Ramona Neckoway and Dr, Stéphane McLachlan began writing research proposals for a project they would soon co-lead, seeking government funding to focus on Indigenous-led responses to COVID-19. In the following discussions, communities highlighted the need to remove barriers that prevented their involvement in decision-making. One of these long-standing barriers is the inability to access and control their own data. The COVID-19 Indigenous App was developed in close collaboration with Indigenous communities to address this issue.
The app was designed for communities to conduct surveys and collect information without the control of external organizations. “Our intent always was to make it accessible to these communities, the idea being that through a digital app, that people would be able to collect their own data, and have control over their own data, and do it in a way that was culturally appropriate and useful, and perhaps not even involve researchers,” said Dr. McLachlan.
Developer Craig Dietrich offered a tour of the app during the conference session, highlighting its features for data control. Each community has access to its own dashboard and unique experience. Community members can only access their own dashboard, and the results of their surveys are kept within their community unless their health director chooses to export the information to other communities or the COVID-19 Indigenous team. Health directors can also choose whether or not the surveys are done anonymously to make space for potential follow-up with community members.
The app has also been developed with an awareness of the intermittent and non-existent internet connectivity in communities across Canada. While the online survey works well for people with a good internet connection, the app has been designed for intermittent connectivity. Once downloaded, it lets community members take surveys without internet. Their responses are uploaded to the server once they reconnect. Surveys are even possible in areas with no internet access. The team has developed a Connectivity Pack which creates a Local Area Network that lets people take the survey without any internet connection. These are more labor intensive, and require community facilitators to travel around and conduct surveys, but they are an important component of the app’s versatility.
The app is also versatile in its survey structure. Communities can use pre-set surveys or make their own, featuring open-ended questions that can be answered with photos, videos, and free form text. Dr. Shanna Lorenz, a digital humanist and co-developer of the app, hopes that this can “incorporate other ways of knowing and seeing the world into this process.” This is also reflected in the app’s holistic approach to health and well-being, which includes psychological, mental, emotional, and spiritual health, on top of the typical biomedical health.
Although the COVID-19 Indigenous App emerged as a response to the pandemic, its flexibility makes it a great option for long-term data collection in all sorts of circumstances. Dr. McLachlan highlighted that “it’s not necessarily about COVID, that it’s emerging just as a data gathering software that people can use for whatever purposes and feel confident in having complete control over it.” To reflect this flexibility and data sovereignty, the app has since been renamed Our Data Indigenous. It is being used across departments to administer community voting, to make decisions on projects and their environmental impacts, and for research on other topics, including diabetes and language use.
Data sovereignty has been and continues to be at the heart of the project. In the words of Dr. Lorenz, the app was driven by “the idea and practice that First Nations should have total control over their data from start to finish, and make decisions about how to formulate questions, how to use that data, and with whom to share that data down the road.”
Communities across Canada are invited to participate in this project. If you are interested in using the Our Data Indigenous App in your community, you can learn more by visiting our webpage for all things app related at: https://covid19indigenous.ca/digital-health-initiative/
In addition, reach out to our Communications Coordinator, Evan Chamakese at firstname.lastname@example.org or (306)-619-3761 for more information. The app will be available on the App Store and Google Play under its new name, Our Data Indigenous, by September 2021. Until then, it can be found as COVID-19 Indigenous.