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Health Data and Information Systems U.S. Territories and Freely Associated States Report

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Health Data and Information Systems U.S. Territories and Freely Associated States Report Health Data and Information System U.S. Territories and Freely Associated States Report December 2009 Prepared for: U.S. Department of Interior Office of Insular Affairs 1849 C Street, NW Washington, DC 20240 Prepared by: With assistance from: Sela V. Panapasa, Ph.D. James A. Weed, Ph.D., University of Michigan Delton Atkinson, MPH, PMP Institute for Social Research Division of Vital Statistics Research Center for Group Dynamics National Center for Health Statistics Program for Research on Black Americans Centers for Disease Control and Prevention http://prd.psc.isr.umich.edu Acknowledgements I would like to acknowledge the invaluable contributions of the health professionals and administrators of the U.S. Territories and Freely Associated States for sharing with us their health data collection systems and help us understand the wide array of health-related data currently being collected within their local communities. The process leading to this Health Data and Information System Catalog (HDISC) involved learning the appropriate protocols for engaging with each of the project areas and seek permission to be able to meet with key personnel who are responsible for the collection and processing of health data and information. First special thanks are extended to the Directors and Health Leaders of the Pacific Island Health Officers Association (PIHOA) and the U.S. Virgin Islands for their leadership, support and guidance throughout this effort. They are Dr. Gregory Dever (Director, Bureau of Hospital and Clinical Services, Palau); Wincener David (Director of Public Health, Pohnpei); Dr. Mark Durand (Director of Health, Yap); Vivian Eberson-Fludd (Commissioner, Department of Health, USVI); Michael Epp (Executive Director, PIHOA); Dr. John Gilmatam (Director of Public Health, Yap); Dr. John Hedson (Director of Clinical Services, Pohnpei); Dr. Riley Jim (Director of Public Health, Pohnpei); Dr. Stevenson Kuartei (Director, Bureau of Public Health, Palau); Justina Langidrik (Secretary of Health, RMI); Aso Utofili Maga (Director, Public Health, American Samoa); Julio Marrar (Director, State Department of Health, Chuuk); Nena Nena (Secretary of Health, FSM); Arthy Nena (Director of Health Services, Kosrae); Marcus Samo (Assistant Secretary for Health, FSM); Dr. Ivan Tuli’au (Medical Director, American Samoa); Dr. John Tuitele (Medical Director, American Samoa); Dr. Abram Ichin (Deputy Director, State Department of Health, Chuuk); Joseph Villagomez (Secretary of Public Health, CNMI); Dr. Victor Yano (Minister of Health, Palau). Secondly, without the Program Coordinators who have been very instrumental throughout this process and deserve recognition for their professionalism, dedication and hard work we would not have been able to acquire such valuable information to get the job done. We wish to thank each and every one of them for their full cooperation, enthusiasm and time. Also, we want to thank representatives of the U.S. Department of Health and Human Services for their encouragement and support, and colleagues in Hawaii and the University of Michigan’s Institute for Social Research for their advice and assistance. The hospitality expressed by the people in the Pacific and Caribbean made working in the islands very pleasent. We owe everyone our deepest gratitude: American Samoa: Dr. Jean Asuega, Anna Brown, Fa’atuai Faoa, Tele Hill, Alisi Iongi-Filiaga, Pasesa Lafitaga, Siga Fili Le’iato, Josephine Lamuyuan, Farah Lesa, Sarona Ma’ae, Yoland Masunu, Ofeira Nu’usolia, Moli Pa’au, Moli Samoa, Dottie Siavi’i, Tai Solomona, Mareta Tuiafono, Dr. Tuitele, Jackie Tulafono, Dr. Ivan Tuli’au, Pasa Turituri, Fale Uele, Fara Utu, and Moira Wright. Commonwealth of the Northern Mariana Islands (CNMI): Annette L. Aguon, Margarita Aldan, Gerard B. Calvo, Dr. Jean Paul Chaine, Vicente Tenorio Chong, John DaxMoreno, Dr. Mary K. Fegurgur, Carolyn R. Garrido, Latisha Lochabay, Maggie Murphy-Bell, Mariana Sablan, Raymond Salas, John Tagabuel, Lynn Tenorio, Margarita Torres Aldan, and John Tagabuel, and Pete Untalan. i http://prd.psc.isr.umich.edu Federated States of Micronesia (FSM): Sheild Angeson, Kathy Asor, Carter Bisau, Holden Dalley, Nancy Lynn Edward, Amato Elymore, Dr. Yalbert Enlet, Martha Esau, Tatari Esah, Casey Freddy, Dr. Marcelle Gallen, James Gilmar, Mercedes Gilmete, Sylvia Guerpin, Reverend Francis Hezel, Helden K. Heldert, Kenye Jackson, Skiller Joe, Caroline Johnny, Dr. Eliasor Johnson, Margaret Lefagoch, Dr. Cindy Lefagopal, Norlin Livae, Marcy Lorrin, Xner Luther, Salome Martin, Patricia Melander, Andita Meyshine, Juliana Mitag, Kiomy Noket, Dr. Herliep Nowell, Theo Onamwar, Denitha Palemar, Moses Patrick, Yumiko Paul, Enrida Pillias, Sigfrit Rain, Boone Rain, Abu Rold, Roslyn Reynold, Arlynn Roby, Moria Shomour, Shiro Sigrah, Siocy Soaz, Sepehr Sohrab, Lucille Stevens, Arlene Takesy, Carston Talley, Martha Thompson, Merinda Timothy, Carsila Tulensa, Kerio Walliby, Sanphy P. William, Sanphy P. William, Cyril Yinnifel, Cindy Ysicar, and Lawrence Yuz. Guam: Terry Argun, Annette Aguon, Leonel Arcangel, Cecilia Archia, W.J. (Brandy) Brandshagen, Gerard Calvo, Peter John Comacho, Dr. Mary Fegurgur, Tuba Gallon, Carolyn Garrido, Dr. Robert Haddock, Vernancio R. Imanil, Jr., Tony Lorenzo, Patrick Lucas, Charles Morriss, Maggie Murphy-Bell, Vince Quichocho, Peter Roberto, Arthur San Augustin, Raymond Salas, Bernadette Schumann, Gil Suguitan, and Angela Tachney. Republic of the Marshall Islands (RMI): Risa J. Bukbuk, Ione DeBrum, Oscar DeBrum, Marita Edwin, Kumi Hanerg, Wilbur Heine, Adri Hicking, Daniel Hone, Helen Jenil, Hillia K. Langrine, Esther Lokboj, Armenta Matthew, Gerard Mejbon, Florina Nathan, Janet Nemra, Daisy Pedro, Chinilla Pedro, Henry Peter, Suzanne Philippo, and Dr. Zachraias Zachraias. Republic of Palau: Martha Dever, Annabel Lyman, Everlynn Belelai, Everett Belelai, Yorah Demei, Tino Fa’atu’uala, Maria Hedenberg, Lucio Hidemi, Kolvas Kloulechad, Margaret Koshiba, Pearl Marumoto, Toshi Misawa, Hilaria Ngemaes, Dr. Kathy Ngemaes-Maddison, Dr. Caleb Otto, Augusta Rengiil, Dr. Louisa Santos, Biribo Tekahene, Husto Ulengehong, Dr. Sylvia Wally, Berry Watson, and Valerie Whipps. U.S. Virgin Islands: Jackie Adams, Christopher E. Finch, Yvonne George, Kathleen J. Greenway, Annette A. Gumbs, Kund Hansen, Lauris Harley, Cherie Hendricks, Gail A. Jackson, Renee Joseph- Rhymer, Francine E. Lang, Jasper Lettsome, Dr. Denese Marshall, Nona McCray, C. Patricia Penn, Justin Phillip-Dorsett, Michal Rhymer-Charles, Patricia Sprauve, Stevie Webster, and Sharon A. Williams.Michal Rhymer-CharlesMichal Rhymer- United States: Nia Aitaoto, Lynnette Araki, Clifford Chang, Debbie Coral, Doris Crawford, Nina Diaz, Megan Durham, Karen Kirchner, Brian Krenz, Kristina Krich, Kirsten McCall, Dr. James McNally, Irine Sorser, Phyllis Stillman, Faye Untalan, Roylynn Wada, Capt. John Walmsley, Capt. Cathy Wassam, and Dr. David Williams. ii http://prd.psc.isr.umich.edu Table of Contents Section Page Executive Summary 1. Introduction ......................................................................................................................................... 1-1 2. Background .......................................................................................................................................... 2-1 3. Catalog Description ............................................................................................................................. 3-1 3.1 Catalog Organization ..................................................................................................................... 3-1 3.2 Methodology .................................................................................................................................. 3-2 3.3 Using These Data Sources ............................................................................................................. 3-2 4. Data Sources by Domain and Policy Issue ........................................................................................ 4-1 5. Data Sources by U.S. Territory and Freely Associated State ......................................................... 5-1 6. Listing of Data Sources ....................................................................................................................... 6-1 Behavioral Risk Factor Surveillance System (BRFSS) ........................................................................ 6-2 Behavioural Surveillance Survey (BSS) ............................................................................................... 6-4 Breast and Cervical Cancer Early Detection Program (BCCEDP) ....................................................... 6-5 Bureau of Family Health and Nursing Services .................................................................................... 6-7 Cancer Registry ..................................................................................................................................... 6-8 CARE Program ..................................................................................................................................... 6-9 Child and Adult Immunizations Registry/Survey ............................................................................... 6-10 Children with Special Healthcare Needs Assessment Survey (CSHNS) ............................................ 6-12 Children with Special Needs Registry ................................................................................................ 6-14 Chronic Disease Program ...................................................................................................................
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