

Exactly, so why not demand ownership of our data?
When you look at data sovereignty in indigenous communities people are already establishing ways to do this.
What’s even more concerning than social networks, jobs, daily commutes, shopping habits, sexual preferences, political views etc. is health data. Not only is that extremely private, corporations recognize the monetary value is incredibly high.
Artificial intelligence models are ever-hungry black boxes that need boatloads of bits and bytes from a wide stream of real-world data in order to produce insights about patients and their care. To satisfy this need, a trove of companies have popped up to buy patient data from hospitals and sell it to those wanting to train AI or do research.
https://www.sciencedirect.com/science/article/pii/S2667321525001775
In today’s digital era, data has evolved into an invaluable asset often described as the new oil making its governance especially consequential for Indigenous communities. Indigenous Data Sovereignty (IDSov) affirms the rights of Indigenous peoples to govern, control, access, and benefit from data that derive from their peoples, lands, and knowledge systems (Carroll et al., 2020). This principle has direct implications for population health because data governance influences how priorities are defined, how prevention and care strategies are implemented, and how health outcomes are assessed across communities (Rhodes et al., 2023). A long history of exclusion from decisions about data collection and use has produced exploitation, misrepresentation, and persistent mistrust in data-driven health initiatives (Fox, 2020; Mello and Wolf, 2010).
There are some models of data sovereignty where people are being given direct control of their health data, and it cannot be legally used for anything without their permission. Even if it’s granted permission to be used once for a certain piece of research, it’s then locked away again afterwards.
There’s also examples where people are paid directly/individually for allowing access to their data.
Imagine the value to be leveraged by people if all data (civic, digital, health) was locked away from corporations. And not sold, temporarily leased to whoever individuals or communities choose to lease if to.




















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100% agree with you
https://debeaumont.org/programs/made-for-health-justice/
https://www.statnews.com/2025/08/27/medical-ai-needs-patient-community-engagement/
https://www.healthaffairs.org/content/forefront/c-c-e-s-s-ai-new-framework-advancing-health-equity-health-care-ai
https://sojo.net/articles/opinion/pope-leo-thinks-nehemiah-can-lead-us-through-ai-age