Northwest Portland Tribal Registry Project
In recent years, health care delivery for Northwest American Indians and Alaska Natives has evolved from a centralized system maintained by the Indian Health Service (IHS) to a diverse and complex environment. The Northwest Tribal Registry Project was developed in January 1999 by the Northwest Tribal Epidemiology Center, a tribally operated program located at the Northwest Portland Area Indian Health Board (NPAIHB) in Portland, Oregon.
The Registry Project works with state health organizations to correct racial misclassification, thereby increasing the quality of disease surveillance data for American Indians and Alaska Natives (AI/AN) in Idaho, Oregon and Washington. Now completed, the goals of the registry project were to:
- ascertain amount of racial misclassification in disease registries;
- obtain accurate estimates of the cancer burden for Northwest AI/AN;
- use linked case information to generate health status information for tribes and health programs; and
- correct misclassification in state cancer registries.
The Registry Project utilizes probabilistic linkage software to match Northwest Indian Health Service Resource and Patient Management System (RPMS) records to state health records and verify correct racial classification in state data. It also provides technical data assistance including cancer and other health statistics to tribal health professionals and community health advocates and works with the Northwest Tribal Cancer Control Project to disseminate cancer data and identify tribal cancer data needs. The Registry serves the 43 federally recognized tribes in Idaho, Oregon, and Washington.
The following publication details the results of the record linkage:
Becker, T. Improving cancer incidence estimates for American Indians and Alaska Natives in the Pacific Northwest. Am J Public Health 2002;92(9):1469-71.
Becker T., MD, PhD, Lambert L. MA, Puukkaa E. MS, Stehr-Green P., DrPH, MPH, Johnson C., MPH. Survival After Cancer Diagnosis among Northwest American Indians/Alaska Natives. Journal of Registry Management 2005(2);32:76-78.
Hoopes MJ, Taualii M, Weiser TM, Brucker R, Becker TM. Including self-reported race to improve cancer surveillance data for American Indians and Alaska Natives in Washington State. Journal of Registry Management 2010; 37(2):43-8.
Puukka E., MS, Stehr-Green P., DrPH, MPH and Becker T., MD, PhD. Measuring the Health Status Gap for American Indians/Alaska Natives: Getting Closer to the Truth. American Journal of Public Health 2005;95(5):838-843.
Puukka E, Stehr-Green P, and Becker T. Cancer incidence among Northwest American Indians and Alaska Natives, 1996-2001. The IHS Primary Care Provider 2004;29(9):212- 216.