Headshot of Ian Blake.

The nation-to-nation relationship is something to hold dear and to defend. It’s easy to push ahead and sign a data sharing agreement that includes language that doesn’t uphold Tribal sovereignty or data sovereignty, because you really want certain data. But it’s so important to remember the people we serve and to thoughtfully consider the implications of doing this. It’s not a good idea to sign any agreement that doesn’t honor the nation-to-nation relationship that the federal government has with Tribes. There are other, more ethical ways of obtaining data.

Ian Blake

Biostatistician
Alaska Native Epidemiology Center

Born and raised in Anchorage, Ian Blake’s love for his community and the people of Alaska is reflected in his work. As a seasoned biostatistician who works at the Alaska Native Epidemiology Center (ANEC), Ian focuses on building strong partnerships, upholding tribal data sovereignty, and keeping the communities he serves at the forefront when maintaining data sharing agreements and responding to requests for data. As such, Ian has some great advice for tribes, tribal and urban Indian organizations, and TECs regarding vetting data requests and data sharing agreements, as well as building strong data sharing partnerships.

Considerations when you are asked to share data

ANEC, housed within the Alaska Native Tribal Health Consortium (ANTHC), is one of the 12 tribal epidemiology centers, or TECs, sprinkled across the U.S. As a TEC staff person there are several guiding principles Ian uses when considering whether or not to share data. First, he works to clarify who is making a request for data, why the entity is requesting data, and how they plan on using the data. According to Ian, “I will often ask the data requestor ‘why are you asking that question?’ The reason is that, at times, we can offer recommendations that might help simplify their process.” Additionally, by asking clarifying questions, Ian also gets a sense of the potential risks and benefits of sharing data and whether or not the requestor aims to uphold tribal data sovereignty. When uncertain about whether or not data sharing is a good idea, Ian consults with others on his team who have more experience.

Good Data Sharing Agreements Are Key

ANEC has several data sharing agreements with outside entities, like state agencies, at any given time. For those new to this work, data sharing agreements, commonly known as DSAs, are contracts that identify what data are being shared and specifically how that data will be stored, protected, and used. In DSAs, data owners also commonly specify their needs, such as, “our organization must approve of any materials you generate before they are published.”

Respecting Tribal Sovereignty and Public Health Authority  

From Ian’s perspective, the need for good data sharing agreements is paramount- both for the requestor and for the owner of the data. Unfortunately, some of the standard language included in federal data sharing agreements indemnifies the federal government from any misuse of tribal data. This runs contrary to the rights of tribes and TECs. As sovereign nations and by federal law, tribes possess public health authority, the authority of a sovereign government to protect the health, safety, and welfare of its citizens. Tribes also possess tribal data sovereignty, or the right to govern the collection, ownership, and application of their own data.

According to Ian, “the nation-to-nation relationship is something to hold dear and to defend. It’s easy to push ahead and sign a DSA that includes language that doesn’t uphold tribal sovereignty or data sovereignty, because you really want certain data. But it’s so important to remember the people we serve and to thoughtfully consider the implications of doing this. It’s not a good idea to sign any agreement that doesn’t honor the nation-to-nation relationship that the federal government has with tribes. There are other, more ethical ways of obtaining data.” To ensure that you and your organization or tribe are acting in ways that support tribal sovereignty and data sovereignty, Ian recommends having your legal team or other tribal legal supports review data sharing agreements before signing.

Work to Cultivate Solid Data Sharing Relationships

According to Ian, “Your relationships in data sharing can make a huge difference. We have developed relationships with state agencies who own datasets we are interested in. Even if a person moves on, there is an understanding that our organizational relationship can persist.” One of the ways ANEC builds these relationships is by hosting an annual Scientific Advisory Council meeting off-site, where they invite clinical directors from the regional health corporations, ANTHC management, state officials from different agencies, and TEC staff. During these meetings Ian and his colleagues share details about how ANEC has used data that was shared, the programs that have been developed based on findings, and the impacts of these programs. Of this Ian said, “It’s no small task, but the benefit is significant. It’s a great way to reflect on the past year, set priorities for moving forward, and show our partners the needs we are fulfilling. I think this has had a huge impact on strengthening our partnerships. Now our partners are more likely to respond to our requests quickly via phone or email, and we are more encouraged to respond as well. Being able to put a face to a name is valuable in this work and working to build trust should not be underestimated.”

To learn more about building strong partnerships, data sharing agreements, public health authority, and engaging with data sharing in ways that respect tribal data sovereignty, check out those respective portions of the toolkit. Also, check out these important considerations for data sharing.

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