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Tribal Epidemiology Toolkit - Data Sharing

Toolkit Sections
Background and Introduction
Data Collection
Data Linkage
Data Sharing
Collaboration Examples
Communication Resources/Tools

As mentioned above, AIAN health authorities have historically faced extra hurdles accessing tribal information collected by federal, state and local governments. There are some examples of governmental efforts to enhance partnerships through formal data-sharing and data handling policies.
Accessing Data: Various mechanisms are available to facilitate data-sharing with tribes and tribal organizations, including state-tribal liaisons, data use/sharing agreements, and the requirement for states to develop tribal consultation policies.
  • Arizona’s tribal consultation policies apply to 34 state agencies/departments. The state’s tribal liaison model was developed specifically to strengthen government-to-government relations between the state and tribes and ensure timely and meaningful consultation with Arizona’s tribal leaders.
  • Minnesota’s state tribal relations are summarized in the aptly named document, Minnesota State Tribal Relations. Minnesota enacted a tribal consultation policy in 2002 and has created a number of tribal advisory committees and state agency tribal liaison positions since then.
  • The New Mexico Department of Health is committed to providing data to all tribal communities within the state to improve the quality of tribal data. New Mexico developed an indicator-based information system and secure tribal queries to improve data-sharing with tribal public health authorities. Data is released based on tribal affiliation or geographic location.
  • Oregon, in 1975, enacted legislation creating a Legislative Commission on Indian Services to improve services to tribal communities throughout the state. All nine federally-recognized tribes in Oregon are represented on the commission and consult with state officials on issues affecting tribal communities. Additionally, to meet federal consultation requirements outlined in the American Recovery and Reinvestment Act of 2009, Oregon Senate Bill 770 stipulates that the Oregon Health Authority meet quarterly with state tribes and representatives of the IHS and tribally operated and urban Indian programs. Oregon also has tribal liaisons in various state departments and developed the useful report, Best Practices in State-Tribal Consultation: Findings from Oregon.
  • The Utah Department of Health adopted a tribal consultation policy in 2006. Utah also implemented a tribal liaison model and hosts an annual American Indian Summit. The state’s department of health tribal liaison worked with tribes and the state legislature to change state data access policies to enable tribal access.
Safeguarding Data: For data to be useful, tribes and tribal organizations often need data that includes protected health information or personal identifying elements. Data use agreements or memoranda of understanding (MOUs) are critical to ensure data protection and confidentiality under these circumstances.
  • A written data-sharing agreement should be in place to assure data are used and managed in accordance with state statutes and with other established policies to protect their confidentiality and integrity. The Utah Department of Health Model data sharing agreement was created for just this purpose.
  • The Northwest Portland Area Indian Health Board Tribal Epidemiology Center has created a guidance document for researchers and tribal authorities, addressing research ethics, data ownership, and principles and models for the development of data-sharing agreements,
  • A sample state protocol for a tribal data request outlines the type of data the state will provide to the tribe and the process for requesting data.
  • The Arizona Department of Health Services has specific MOUs outlining how the state shares data with TECs and IHS authorities.
  • This data sharing agreement outlines how a state and IHS share data with each other to enhance public health surveillance and disease prevention/health promotion initiatives. The state can then incorporate the IHS data into its own data systems.
  • This sample MOU details how AIAN state data is shared with a TEC to meet federal guidelines addressing TEC public health, epidemiology and health research functions.
  • The National Institute of Health Data Sharing Workbook shows how investigators working in a variety of scientific areas have shared their data. It addresses the rights of human subjects; protection of proprietary data; and accessing data from data archives, federated data systems and data enclaves.
Here are two specific examples of successful data sharing.
  • The Alaska Native Epidemiology Center collaborated with the Alaska Division of Public Health to produce a report, Alaska Maternal and Child Health Data Book 2011: Alaska Native Edition, based on data from the Pregnancy Risk Assessment Monitoring System and the Childhood Understanding Behaviors Survey.
  • The Navajo Cancer Workgroup used data from the Arizona Cancer Registry; New Mexico Tumor Registry; National Cancer Institute Surveillance, Epidemiology and End Results Program (SEER); and CDC to develop a Navajo-specific cancer report.

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