Current ITHS Projects
Locally Controlled Data QUEST
Community Outreach and Research Translational Core
Institute of Translational Health Sciences
To see the Power Point in PDF format please click here.
The Community Outreach and Translation Core of the University of Washington Institute of Translational Sciences disseminates and implements research findings from academic and community settings. One of the Core's three community partners is American Indian and Alaska Native communities in Washington, Wyoming, Alaska, Montana, and Idaho. To prepare tribal communities to participate in research, the Core will collaborate with the Bioinfomatics Core to conduct a pilot project with selected American Indian and Alaska Native tribes, health programs, and urban Indian health clinics to create an electronic data sharing tool that is owned and strictly controlled by local communities. The pilot project is called Locally Controlled Data Quest (Query, Extraction, Standardization and Translation). The data then can be used not only for research, but also to enroll people into clinical trials, for quality assurance purposes, to monitor clnical care, and for other functions.
Locally controlled data can minimize the distrust about research often encountered among Native peoples because investigators can access information only under protocols developed by the owners of the data. These protocols are designed to protect individual identities and health information, as well as community confidentially. In this way, local authorities can oversee and regulate access to their data, and release it only when the proposed research has been determined to benefit the health of their constitutents. With control of the data, tribes and Native organizations can also quickly identify emerging or growing health problems as targets for investigation.
For more information please contact:
Jay LaPlante (Blackfoot/Cree)
206-616-5957
jay11@u.washington.edu
American Indian/Alaska Native Consents Analysis Project
American Indians and Alaska Natives suffer significant health disparities when compared to all United States races. These disparities include diabetes, cardiovascular disease, substance abuse, and a variety of other health concerns. These disparities persist even while the United States provides approximately 3.8 billion dollars of annual funding to the Indian Health Service for provision of health care to American Indians and Alaska Natives. Obviously continuing research addressing the causes of these disparities is needed.
The recruitment of American Indians and Alaska Natives to participate in research is complicated by a troubled history between researchers and the Native population of the United States. Conflicts between Native Americans and researchers began almost two centuries ago when researchers, with support from the United States government, vigorously collected Native remains and artifacts. Even with limited protection of various state and federal statutes such as the Native American Graves Protection and Repatriation Act, conflicts such as the litigation between tribes and researchers over access to a very ancient human skeleton deemed “Kennewick Man” or the “Ancient One”.
Even research targeted at discovering causes of health disparities are not without controversy. Incidents such as the Barrow Alcohol Study, the Nuu-Chah-Nulth rheumatoid arthritis genetic study, and the Havasupai diabetes genetics study have placed University research practices on the National tribal agenda. This is best reflected by the several resolutions passed by the National Congress of American Indians decrying the actions of the University researchers in the Havasupai litigation and resolutions supporting tribal control over research occurring within their communities and data collected from these research projects. It is within this environment that researchers must convince Native Americans to participate in research.
One way to improve Native American participation in research is to address those issues that have been to increase and decrease willingness of American Indians and Alaska Natives to participate in research. Studies have shown that Native Americans’ willingness to participate in research improves if their community is involved in the project development, data collection and interpretation of results. These same studies have also shown even higher increases in the willingness to participate if the research involves a topic of concern to the tribal community. Finally, these studies have also shown a high concern with breaches of confidentiality, likely as a result of the small and insular nature of many tribal communities, and a high concern if the project is seen as being conducted by the “federal government”, likely as a result of past abuses by the United States.
The primary way potential research participants learn about a research project is through information and/or consent documents provided to them at the beginning of a study. This project will examine documents provided to American Indian and Alaska Natives research participants by the University of Washington to determine what information elements are being conveyed. Our specific aims are:
- To identify all research projects at the University of Washington from 2000 to present which specifically recruit participation by American Indians and Alaska Natives;
- To examine the materials provided to the University of Washington Institutional Review Board by these researchers to determine the range of information provided to potential participants; and
- To make recommendations for elements to be included in future consent documents providing information to potential participants which allay concerns and maximize participation.
The goal of this research proposal is to discover what elements of information are currently being provided to American Indian and Alaska Native research participants and make recommendations for additional elements which both increase willingness to participate in research and allay concerns regarding research generally.
ITHS-About Us, ITHS-Facilitating Tribal Regulation of Research, ITHS-Tribal Research Consultation Service, ITHS-Current Projects.
