Improving Cancer Data Quality in U.S. Affiliated Pacific Island Jurisdictions
Pacific Regional Central Cancer Registry
Effective cancer control programs require accurate baseline information and surveillance. The technology, resources, and complexity required for meaningful cancer registries have been difficult to maintain1 in the U.S. Affiliated Pacific Island (USAPI) jurisdictions,* especially when superimposed upon a base of poorly trained and inadequate numbers of health workers.2 Additionally, limitations in cancer diagnosis hamper accurate recording of information. Many cancer patients still are diagnosed too late, rendering the patient ineligible for off-island curative care. Most have no option except to remain at home to die, with inadequate access to palliative care.
Recognizing the critical need for improved data quality across the USAPI,3 the Cancer Council of the Pacific Islands (CCPI) has a long-term goal to develop functional cancer registries in each jurisdiction. The University of Hawaii (UH) Department of Family Medicine and Community Health received funding from CDC's National Program of Cancer Registries (NPCR) to conduct a cancer registry assessment in 2005–2006. This informed the policy decision to regionalize cancer registry functions, while allowing for jurisdiction-specific data and reporting needs. The UH works with the jurisdictions to develop the Pacific Regional Central Cancer Registry (PRCCR). The PRCCR, housed at the University of Guam, continues to leverage resources and build partnerships upon existing National Cancer Institute (NCI)-funded efforts to improve the Guam Cancer Registry.
The first two years of the PRCCR cooperative agreement focused on training, policy development, and addressing infrastructure challenges. Technical assistance and training, conducted in partnership with the Hawaii Tumor Registry and CDC's NPCR, developed a core group of "home-grown" cancer registry professionals. Despite ongoing challenges, four of the six USAPI successfully reported 243 cancer cases for diagnosis year 2007, and an additional 351 cases for 2008, to NPCR in January 2010. New enacting legislation was passed in the Republic of the Marshall Islands and the Federated States of Micronesia. American Samoa amended their Cancer Registry Act to allow their Director of Health to enter into data-sharing agreements with other jurisdictions. Enacting legislation is moving through the Commonwealth of the Northern Mariana Islands CNMI Legislature. All six countries, the University of Guam (PRCCR), and the Hawaii Tumor Registry entered into a jurisdiction data-sharing agreement to facilitate correct reporting of cancer cases.
These cancer registries are helping to lead process improvement and serve as model efforts to leverage scarce resources in close coordination with local and regional policy makers and community members. PRCCR efforts align closely with the strategic plan of the Pacific Islands Health Officers Association (PIHOA), the regional health policy-making body comprised of the senior ranking health official of each country or jurisdiction (i.e., Minister, Secretary, or Director of Health). PIHOA-guided quality improvement efforts have been linked to the cancer registries in several jurisdictions.
Local (country) registry data is shared with comprehensive cancer control (CCC) programs to guide their work in survivorship, research, and health policy. We thank CDC, NCI, and the National Partnership for CCC for their continued commitment to reduce health disparities among the peoples of the USAPI.
*The USAPI is comprised of three Flag Territories and three Freely Associated States (FAS). The Flag Territories are American Samoa, Guam, and the Commonwealth of the Northern Mariana Islands. The Freely Associated States include the Republic of the Marshall Islands, the Republic of Belau (also known as Palau), and the Federated States of Micronesia which consists of Yap, Pohnpei, Kosrae, and the Chuuk States.
2Dever G, Buenconsejo-Lum LE, Cuboni G, Durand M, et al. Human Resources for Health Challenges in the Freely Associated States of Micronesia. Prepared for the U.S. Secretary of the Interior (Dirk Kempthorne), "Future of Health Care in the U.S. Insular Areas: A Health Leaders Summit," September 29–30, 2008, Honolulu, Hawaii.
3Katz AR, Palafox NA, Johnson DB, Yamada S, Ou AC, Minami JS. Cancer epidemiology in the freely associated U.S. Pacific Island jurisdictions: challenges and methodologic issues. Pacific Health Dialog 2004;11(2):84–87.