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Rick Strickland Spirit of EAGLES University of Wisconsin Comp. Cancer Ctr. strickla@uwccc.wisc.edu 608.262.0072. Spirit of EAGLES - North Central NARCH: Improving American Indian Cancer Surveillance and Data Reporting in Wisconsin. Project Background.
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Rick StricklandSpirit of EAGLES University of Wisconsin Comp. Cancer Ctr.strickla@uwccc.wisc.edu608.262.0072 Spirit of EAGLES - North Central NARCH: Improving American Indian Cancer Surveillance and Data Reporting in Wisconsin
Project Background • A Great Lakes NARCH project • LOI reviewed/selected by tribal health directors • Create a cancer profile: a retrospective study of cancer cases in tribal clinic records • Exempt study: only clinic staff see PHI • Implementation agreements negotiated with each tribe/urban center
Cancer Profile Process • Negotiate agreement with Tribal/Urban clinic • Initial training on profile process / form • Modification of form w/ clinic questions • Data abstraction and ongoing consultation • Data entry and quality control • Preliminary analysis w/clinic & GLITC staff • Finalize tribal report • Present results to clinic representatives • Aggregate analysis, report & publication
Preliminary Analysis • Epidemiologist at Great Lakes Inter-Tribal Council prepares an analysis • SOE staff review GLITC analysis and prepare draft report • Draft report sent to tribal staff; meeting scheduled • Hold on-site analysis meeting with GLITC, SOE staff, tribal staff and other tribal representatives • Record, revise and prepare draft final report • Send draft final report and consult by telephone
Mutual Benefits of Preliminary Analysis in this Project • Educational opportunity for all parties • New questions…and data requests • Unique interpretative insights • Opportunity to evaluate record data & quality • Identification of possible changes in practice • Capacity / limits of statistics with small numbers of cases • Value of local knowledge
Notes on Community Consultation • Key issues: experience / trust / time available / funding support / capacity • Tribal partners are busy • Will decide when and how to be involved • Involvement varies with the project • Community and academic reward strucutres differ