Links to Other Resources for Partnerships
Below are links to several websites and documents that provide guidelines, sample data use agreements (also referred to as data sharing agreements) and other information that may assist you when considering data sharing partnerships for research or other purposes.
|CIRTification: Community Involvement in Research Training
This training module is targeted at community members or organizations new to research processes and procedures, addressing the ethical practices of conducting research in a community. The module includes a facilitator manual, PowerPoint presentations and a participant workbook.
|Community-Campus Partnerships for Health – Community-Campus Partnerships: Toolkits and Databases
Community-Campus Partnerships for Health provides a list of useful tools and resources for creating, evaluating and maintaining productive partnerships between communities and academic institutions.
|Community-Campus Partnerships for Health – Community IRBs & Research Review Boards: Shaping the Future of Community-Engaged Research
This report provides information about community Institutional Review Boards (IRBs) and how they help frame ethical research projects that are sensitive to the needs and desires of the community. It also discusses these IRBs’ review mechanisms.
|Council of State and Territorial Epidemiologists. Tribal Data Linkage Toolkit – Samples
The Council of State and Territorial Epidemiologists provides samples of a data sharing agreement and a confidentiality pledge, which lists rules for accessing data with personal identifiers.
|Documents Library of Data Sharing Agreements
The Documents Library includes 48 publically available data sharing agreements that have been reviewed and analyzed by the Inter-Organizational Collaborative.
|Genetics Research and American Indian/Alaska Native Communities
Developed by the NCAI PRC this informational brief provides background about genetics research in American Indian/Alaska Native (AI/AN) communities. It includes a list of questions for communities to consider and an appendix with links to other relevant resources.
|National Congress of American Indians (NCAI) Policy Research Center – Tribal Research Regulation Toolkit
The National Congress of American Indians Policy Research Center (NCAI PRC) developed this collection of user-friendly tools and resources to support AI/AN leaders and their communities in regulating research. Highlighted here are two of these resources that are particularly helpful for data sharing partnerships.
|Office of the National Coordinator for Health IT
The Inter-Organizational Agreements Collaborative developed model data sharing agreements and guides to provide health care providers and governmental departments with information to assist with exchanging electronic health information. These tools, including the following Documents Library of Data Sharing Agreements, are available at the Office of the National Coordinator for Health IT website.
|The PARTNER Tool: Program to Analyze, Record, and Track Networks to Enhance Relationships
The PARTNER Tool analyzes social networks to determine the strength of your partnerships, how community members are connected and how resources are exchanged. There are extensive online resources including Web Demonstrations.
|Research Review Checklist for American Indian and Alaska Native Communities
The National Congress of American Indians Policy Research Center (NCAI PRC) has devel¬oped this checklist as a guide for reviewing research projects. The checklist includes several factors that are useful to consider when developing a DUA.
|Victoria Health – The Partnerships Analysis Tool
This tool from Victoria Health Department, Australia is a resource for developing, analyzing and promoting partnerships. It includes an interactive checklist to help determine the strength of an existing collaboration.