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2018 Data Dictionary: Alaska Public Health Data Sources

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2018 Data Dictionary: Alaska Public Health Data Sources Data Dictionary Alaska Public Health Data Sources Data Dictionary Alaska Public Health Data Sources Updated June 2018 Prepared by: Section of Epidemiology Division of Public Health Department of Health and Social Services State of Alaska Suggested Citation: Data Dictionary: Alaska Public Health Data Sources. Alaska Department of Health and Social Services. Released June 2018. Table of Contents Alaska Birth Defects Registry (ABDR)………………………………………………………………………..……………….Page 4 Alaska Cancer Registry (ACR)……………………………………………………………………………………….…….…..….Page 6 Su Alaska Drowning Surveillance System (AKDSS)……………………………………………………………………….Su SA Page 7 Alaska Firearm Injury Report Surveillance System (AKFIRSS)………………………………………..….……Su SA Page 8 Alaska Lead Surveillance Program……………………………………………………………………………….…...……. Su Page 9 Alaska Occupational Disease and Injury Surveillance System (AKODISS)……………………………………..Page 10 Alaska Population Estimates Program…………………………………………………………….…………………………Page 11 Alaska Population Projections Program……………………………………………………….……………………………..Page 12 Alaska Statewide Hair Mercury Biomonitoring Program………………………………………………………….Page 13 Alaska Surveillance, Tracking, and Reporting System (AK-STARS)…......................................................Page 14 Alaska Trauma Registry (ATR) …………………….....................................................................................Su SA Op Page 16 Alaska Uniform Response Online Reporting Access (AURORA)……………………….…………………………Su SA Op Page 18 Alaska Violent Death Reporting System (AKVDRS) ……………….……………………….……....…………………Su SA Op Page 19 Alaska Vital Statistics………………………………………..…………………………………………...………………………….Su SA Op Page 20 Behavioral Risk Factor Surveillance System (BRFSS)..………………….......................………………………..Su SA Page 21 Childhood Understanding Behaviors Survey (CUBS)……………………………………………...........................SA Page 23 Fatality Analysis Reporting System (FARS)……………………………………………………………...........................SA Op Page 25 Health Facilities Data Reporting Program (HFDR)……………………………………………….………………………..Su SA Op Page 26 Informed Alaskans Initiative……………………………………………………………………………………………………Su SA Op Page 27 InstantAtlas Health Maps……………………………………………………………………………………………………Su SA Op Page 27 AK-IBIS Health Data…………………………………………………………………………………………………………..Su SA Op Page 29 Juvenile Offender Management Information System (JOMIS)……………………………………………….SA Op Page 31 Maternal and Child Death Review (MCDR) Program……………………………………………………………………Su SA Op Page 32 Office of Children’s Services (OCS)……………………………………………………………………………………….. Page 33 Pregnancy Risk Assessment Monitoring System (PRAMS)………………………………….………………………..SA Page 34 Prescription Drug Monitoring Program (PDMP)……………………………………………………………………………Op Page 35 Student Weight Status Surveillance System (SWSSS)……………………………………….……………………………Page 36 Syndromic Surveillance (formerly BioSense)………………………………………………….……………………..Su SA Op Page 38 VacTrAK – the Alaska Immunization Information System………………………………………………………….Page 39 Youth Risk Behavior Surveillance System (YRBSS)………………………….…………………….………………………..Su SA Page. 41 Appendix. Section-Specific Links for Requesting Data………………………………………………………………………Page 43 Symbol Legend Su =includes data on suicide SA = includes data on substance abuse Op =includes data on opioid use Alaska Birth Defects Registry (ABDR) ALASKA PUBLIC HEALTH DATA SOURCE: IDENTIFICATION OF RACE/ETHNICITY: Alaska Birth Defects Registry (ABDR) Maternal race is available in bridged race categories. PURPOSE: CONTACT: The Alaska Birth Defects Registry (ABDR) is a passive Jared W. Parrish, PhD surveillance program that collects and provides AK Dept. of Health & Social Services information on the number of infants with birth MCH-Epidemiology defects born to Alaska residents. It was established Senior Epidemiologist in 1996 under the Alaska Administrative Code (7 AAC 3601 C St. Ste 358 | Anchorage, AK 99503 27.012), which requires health care providers, Tel: (907) 269-8068 hospitals, and other health care facilities to report to Fax: (907) 269-3493 the ABDR when they have cared for a child with a Email: [email protected] congenital birth defect. Data from the ABDR are used to LINKS: • Estimate the prevalence of congenital anomalies Alaska Birth Defects Registry Website: within populations and investigate unusual http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/abdr patterns of occurrence; /default.aspx • Monitor the prevalence of birth defects in populations with identifiable or preventable Program Data and Reports: exposures, and determine whether known http://dhss.alaska.gov/dph/wcfh/Pages/mchepi/abdr exposures have increased the risk of birth defects; /Data_Reports.aspx • Conduct analytic studies of high prevalence conditions to elucidate possible etiologies and DATA REQUESTS AND DATABASE ACCESS: prevention strategies; Although data has been collected since 1996, the • Provide scientific foundation for evidence-based data processing changed drastically in 2007; thus, decision making; and current research datasets are available for the years • Observe and evaluate the effects of interventions 2007-2013. Historical data can be made available and policy changes. upon special request. Provisional data 2014-current can also be accessed for special projects with clear DATES/FREQUENCY OF DATA COLLECTION: understanding of data limitations. All data requests Data collection has been ongoing since 1996. The can be made by filling out the MCH-Epi Data Request ABDR program currently has a six year time lag as Form. Currently, no charge is affixed to accessing providers are allowed to report defects in patients these ABDR data. However, fees may be instituted up to six years of age. Using a Bayesian approach, for data requests that require extensive analysis and program staff have reduced the lag in reporting data manipulation, such as integrating with other statewide prevalence estimates to three years. A data systems. research dataset from birth years 2007 – 2013 is available. Historical data from 1996 – 2012 is also available but strongly advised to use with caution when making extrapolations due to changes in surveillance processes. Likewise, provisional data from 2014 – current can be retrieved and analyzed for special projects. Page 4 Alaska Birth Defects Registry (ABDR) TOPICS: All major structural defects, genetic disorders, disorders resulting from prenatal exposure to alcohol or other substances, neuromuscular defects, cardiac defects, and all other major and minor birth defects. LIMITATIONS: The ABDR data are obtained through passive data collection from multiple health care providers across the state in the form of International Classification of Disease codes (ICD). Data reporting can be inconsistent, resulting in annual fluctuations that are unrelated to actual disease occurrence. Additionally, ICD codes may not reflect actual diagnosis. To address this issue, ABDR is working at developing adjusted defect prevalence estimates though case sampling, medical records review, and Bayesian adjustment. The ABDR program will not release potentially identifiable data (n<6). Finally, due to the lag in reporting (reports are received up until age 6 years), the lag time in closing out record sets can impact timeliness; however, with the Bayesian adjustment approach, data are being closed out with reports before the 3rd birthday. Page 5 Alaska Cancer Registry (ACR) ALASKA PUBLIC HEALTH DATA SOURCE: CONTACT: Alaska Cancer Registry (ACR) David O’Brien, PhD Public Health Data Analyst PURPOSE: Cancer Prevention and Control Program The Alaska Cancer Registry (ACR) is a population- Health Analytics and Vital Records Section based cancer surveillance system and is funded by Alaska Department of Health and Social Services the Centers for Disease Control and Prevention 3601 C Street, Suite 722 (CDC). ACR collects data on all newly diagnosed Anchorage, Alaska 99503 cases of cancer (including benign brain) for the State Phone: (907) 269-8047 of Alaska. ACR collects a wide variety of information Email: [email protected] to determine cancer incidence, mortality, treatment and survival. The data are used to: LINKS: • determine the incidence of cancer in Alaska with Alaska Cancer Registry Website: respect to geographic and demographic http://dhss.alaska.gov/dph/Chronic/Pages/Cancer/re characteristics gistry.aspx • monitor trends over time • monitor early detection, evaluate the DATA REQUESTS AND DATABASE ACCESS: effectiveness of cancer control programs and Aggregated statistics are available on the ACR identify areas in need of public health website under the section titled “Data and interventions Statistics”. Resources here include summary data • determine how Alaska compares with the rest of reports; tables of incidence and mortality data the Nation aggregated by year, sex, race, and borough/census • provide a database and serve as a resource for area; and links to national cancer data websites. health planners, medical professionals, Aggregated statistics not found in these resources researchers and others concerned about cancer are available by request by filling out a data request form. De-identified datasets for research projects The registry operates under several statutes and approved by an Institutional Review Board (IRB) are regulations required for compliance with the Cancer available by filling out a data use for research Registries Amendment Act, Public Law 102-515: agreement. Database access is limited to Alaska Alaska Administrative Code 7 AAC 27.011 - Reporting Cancer Registry staff.
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