Obtaining Data
Want to make requesting and obtaining health data easier? Learn more by reading these expert tips for obtaining health data and through exploring the content below. If you are ready to request data, consider completing this worksheet to prepare.
Requesting Health Data
Should I Request Data?
Decide if requesting data is the best choice.
Prepare to Make the Ask
Before requesting data you need to be ready.
Request Health Data
Learn the ins and outs of requesting data.
Know Your Rights
Public health authorities have certain rights when it come to requesting data.
Protect Your People
Confirm that all partners and data agreementsData sharing agreements are formal contracts that identify what data are being shared and how data will be used and protected. More respect 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. More.
Plan to Protect Your Data
Clarify how you and your partner will protect the data.
Sign a Data Agreement
By signing a data agreement, you protect the people whose info is contained in the data. You also protect your Tribe or organization.
Get & Analyze the Data
Receive and analyze the data you requested while upholding the data agreement you signed.
Help Your People
Use your findings to help your leadership make good decisions that support the health of your community.
Data Agreements
To obtain data, we often must sign at least one data agreement. Data agreementsData sharing agreements are formal contracts that identify what data are being shared and how data will be used and protected. More often describe how the data will be collected, used, kept safe, and destroyed. This is called 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. More. Learn about the common types of data agreements and important data stewardship considerations for Tribes and Native-serving organizationsFor this resource, Native-serving organizations includes Tribal and urban Indian organizations and Tribal Epidemiology Centers (TECs). More.
Our Stories are Powerful
Read these stories to learn important lessons about making the request to obtain data.
The state, the Tribes, NPAIHB, and IHS have a responsibility to meet the public health needs of the communities we mutually serve. Capturing these commitments on paper in a way that respects Tribal sovereignty and Tribal data sovereignty makes them more durable.
We saw that Tribal members were misclassified very frequently. For some Tribal communities the state cancer registry misclassification rate was 80%. That’s really high. When we made changes, it made a BIG impact. For example, some Tribal leaders had thought that diabetes was a higher priority to address, but the reports actually showed that cancer was impacting their people more. After that, more leaders wanted their communities to have access to this quality information.
Know that you are in the driver’s seat as a sovereign nation. 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… You must know your rights and be willing to exercise your authority when partners do not respect your sovereignty and care for your community’s data.
