The Tulalip Tribes have struck an agreement with the Washington State Department of Health that gives the Tribe more access and control over their health data.
Before the agreement, the Tulalip Tribes received information from the health department. The new data sharing agreement allows the Tribe to access the information themselves and pull or analyze whatever they need.
Summer Hammons, a legislative policy analyst with the Tulalip Tribes, said the access will eventually help guide resources to provide better care for health conditions.
"As this grows, we'll be able to look at those trends. And the health providers will be able to say, 'hey, let's add more to this or this or this because we're understanding these trends now'," Hammons said.
Hammons said that access also gives the Tribe real-time information to stay on top of disease outbreaks.
“We – in real-time – need more information,” she said. “So working with the state on this will help us identify how to keep our communities safe and to work with other communities, too, so that we could be proactive.”
With the agreement, the Tulalip Tribes will gain access to several state data systems over time. The Tribe will first be able to access the Washington Disease Reporting System, which receives information from providers and labs on diseases and conditions like COVID-19, mpox and lead levels in children. If the Tribe later want access to more systems, the data sharing agreement is flexible and allows for that.
The agreement promotes tribal data sovereignty, which refers to a tribe's right to govern information about its members. It gives the Tribe a say on how that information is stored, collected and used by the state health department.
“If we are wanting to publish a report that utilizes Tulalip Tribe data or if we're doing analysis on data that clearly relates to Tulalip Tribe, we would inform them of this activity before we proceeded," said Kristin Peterson, chief of policy for the state health department.
Peterson said the agreement also outlines a process if the Tulalip Tribes deny permission to share certain information.
“If we get into that situation where we feel strongly for public health reasons we need to share data and there’s a disagreement around that decision with a tribe, then we would enter consultation,” she said. “And hopefully -- through conversation -- better understand the reason, and if there’s any compromise or a way to address what we’re trying to accomplish.”
The agreement is the first of its kind in Washington, and state health officials hope other tribes will enter similar agreements.