Part of Caring for Native PeopleNative people in this resource means American Indian and Alaska Native people. and Communities is Caring for Their Data: Northwest TEC Shares Important Data StewardshipData stewardship is how a Tribe, organization, or agency plan to care for data. This includes how it collects, protects, uses, and shares data. Considerations for Tribes and Native-serving OrganizationsFor this resource, Native-serving organizations includes Tribal and urban Indian organizations and Tribal Epidemiology Centers (TECs).

“Being a responsible data steward is all about building and working to maintain bidirectional trust,” Dr. Victoria Warren-Mears emphatically stated from her home office. As the Director of the Northwest Tribal Epidemiology Center (NWTEC), Victoria acknowledges that building trust is an active process. According to Victoria, this facilitates NWTEC in supporting member Tribes in harnessing the power of health data to meet their goals.

According to Victoria, part of the role of NWTEC, like other Tribal Epidemiology Centers, is to assist Tribes in being good data stewards. NWTEC also provides epidemiological, research, evaluation, and data management services to member Tribes. Additionally they help Tribal staff and leadership think through how to ensure that data being collected on their people is shared and interpreted appropriately.

“The way I think about data stewardshipData stewardship is how a Tribe, organization, or agency plan to care for data. This includes how it collects, protects, uses, and shares data. is caretaking of data,” Victoria explained. Victoria and her colleagues care for member Tribes’ data in a number of ways. One way is through ensuring that Tribal staff and leadership take the lead when it comes to making sense of data. “When you are stewarding data,” she explained, “you know that the interpretation of the data is not yours- even when it comes to quantitative data. The data doesn’t belong to you. There might be a story that goes along with the data and that story isn’t yours to tell, because you are not immersed in the community.” Interpretation of data, she underscores, belongs to the Tribal members who are able to contextualize the data so that elements of history, culture, and community strengths are accounted for. It is this bidirectional process of data caretaking on the part of NWTEC and data interpretation on the part of Tribes that moves intervention science forward, promotes community buy-in, and ultimately improves health outcomes.

Another important part of data caretaking that NWTEC engages in is upholding boundaries Tribes set in place around who is allowed to access and share Tribal data. Being a good steward of data, Victoria explained, is part of honoring Tribal sovereignty and Tribal data sovereigntyis the right each Tribe has to govern the collection, ownership, and application of its own data. It derives from Tribes’ inherent right to govern their peoples, lands, and resources. Principles of Tribal (or Indigenous) data sovereignty can apply to data on American Indian and Alaska Native people off Tribal lands.. “Since Tribes are domestic sovereign nations,” she said “they are their own public health authorities and are allowed to control their data as they desire. Any data collected on a Tribe, belongs to the Tribe.”

Creating strong data sharingData sharing includes obtaining and sharing data.  agreements (DSAs)- that outline the process of how data is collected, shared, used, and destroyed- is essential for helping Tribes protect their data and their community. Victoria and her colleagues often provide technical assistance to Tribes to help them create and uphold DSAs. For example, in addition to housing their own institutional review board (IRB), at the request of member Tribes, NWTEC has acted as an observer on other IRB’s to make sure questions around data stewardshipData stewardship is how a Tribe, organization, or agency plan to care for data. This includes how it collects, protects, uses, and shares data. are addressed. While most IRB’s work to protect the treatment of individuals participating in research studies, “our IRB functions slightly differently, because they look at protecting the community, as well as the individual,” Victoria explained.

Another aspect of being a good data steward is upholding DSAs. Victoria and her colleagues at NWTEC have faced pressure from funders to share Tribal data in ways that Tribal partners had not consented to. For example, Victoria faced pressure when a funder wanted her team to report data to a central data manager who had not signed on to a DSA with the Tribes. In those instances, Victoria has always been a steadfast protector of the data that she and her team were entrusted to hold.

Victoria and her team also protect data by ensuring that Tribes approve of all secondary data analysis. For example, NWTEC has protocols in place that require Tribal approval when researchers want to use existing data to answer a question different from the research question originally agreed upon. “If a research study changes, then the data sharingData sharing includes obtaining and sharing data.  plan needs to change as well. We can’t let individuals try to analyze Tribal data in a way the Tribes have not consented to. Allowing secondary analysis without Tribal consent does not uphold Tribal sovereignty or Tribal data sovereigntyis the right each Tribe has to govern the collection, ownership, and application of its own data. It derives from Tribes’ inherent right to govern their peoples, lands, and resources. Principles of Tribal (or Indigenous) data sovereignty can apply to data on American Indian and Alaska Native people off Tribal lands.,” she emphasized.

Victoria and her colleagues know that solid data stewardshipData stewardship is how a Tribe, organization, or agency plan to care for data. This includes how it collects, protects, uses, and shares data. is an ethical imperative and benchmark of sound science. She hopes that all Tribes “realize that when you are approached to do work, you know that you are in the driver’s seat as sovereign nations. You have control over who you work with and how you work with them. If what you hear from a researcher doesn’t gel with the values of your community, listen to your intuition. DSAs create transparency, trust, and allow long lasting and mutually beneficial partnerships between researchers and Tribes to grow. But you must know your rights as sovereigns and be willing to exercise your authority when partners do not respect your sovereignty.”