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Strengthening Relationships Between SEER and the Michigan Cancer Surveillance Program Carole Eberle, BS, CTR, RHIA, RHIT October 13, 2005 Michigan Cancer Registrars Association Annual Educational Conference Sault St Marie, MI Our Discussion Today I. Who We Are II. We Are All In This Together III. Our Work IS Important IV. Let The Games Begin War Against Cancer National Cancer Act signed into law on December 23, 1971 by President Nixon Are We Winning the War? Incredible advances in detection, prevention and treatment Cancer death rate has been decreasing steadily Researchers have identified “triggers” I. Who We Are Carole Eberle, BS, CTR, RHIA, RHIT State/SEER Coordinator [email protected] Kari Borden, AA, CTR, RHIT Quality Assurance Field Representative [email protected] II. We Are All In This Together A. Centers for Disease Control (CDC) National Program of Cancer Registries (NPCR) B. National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) Program It Starts with YOU! Hospital/ Source Database State NPCR/ CDC Local SEER NCI NCDB A. National Program of Cancer Registries (NPCR) A program of the Centers for Disease Control (CDC) STATE State Cancer Registries are designed to: Monitor cancer trends over time Determine cancer patterns in various populations Guide planning and evaluation of cancer control programs (determine whether prevention, screening and treatment efforts are making a difference) Help set priorities for allocating health resources Advance clinical, epidemologic, and health services research Provide information for a national database of cancer incidence Michigan Cancer Surveillance Program (MCSP) Operates within the State Department of Community Health Act No. 82 of 1984 requires the reporting of cancer cases by Michigan licensed hospitals and laboratories Administrative Rule 325.9053 provides the MCSP with the authority to conduct quality assurance reviews within each reporting entity to ensure consistency and completeness of the statewide cancer incidence registry MCSP (continued) It was created to enable the conduct of cancer surveillance activities to monitor trends in the occurrence of cancer It serves as a resource for researchers investigating epidemiological, etiological and cancer control research questions NPCR/CDC Cancer Registries: Essential to Reducing the Cancer Burden The data collected enable public health professionals to better understand and address the cancer burden Registry data are critical for targeting programs focused on risk-related behaviors (for ex: tobacco use and exposure to the sun) or environmental risk factors (for ex: radiation and chemical exposures) Such info is also essential for identifying when and where cancer screening efforts should be enhanced and for monitoring the treatment provided to cancer patients Reliable registry data are fundamental to a variety of research efforts. National Program of Cancer Registries (NPCR) Cancer Registries Amendment Act-Public Law 102-515 enacted in 1992 by the U.S. Congress Authorizes the CDC to provide funds to: 45 states 3 territories District of Columbia NPCR--States NPCR Purpose to improve existing cancer registries to plan & implement registries where they do not exist to develop model legislation & regulations for states to enhance the viability of registry operations NPCR Purpose to (continued) set standards for data completeness, timeliness and quality to provide training for registry personnel and to help establish a computerized reporting & data processing system NPCR “A national system of cancer registries can help us understand the disease better and use our resources to the best effect in prevention and treatment” Donna E. Shalala, PhD Former Secretary, U.S. Department of Health and Human Services NPCR “One of the key programs at the CDC is a cancer registry program. Every state has a cancer registry, and that really is our ability to collect the data and analyze it and to understand what kinds of trends are going on in terms of cancer incidence and mortality. Without that data, we really can’t fight the war against cancer. It’s almost as if without registries we go into a war without a map as to where the enemy is.” Ilisa Halpern, Director of Federal Government Relations for the American Cancer Society NPCR Collects information on cancer cases occurring among 96% of the U.S.population Enables CDC to provide valuable feedback to help state registries improve the quality and usefulness of their data and link with other databases Makes available regional and national data which facilitates studies in areas such as rare cancers, cancer in children, the quality of cancer care and cancer among specific racial/ethnic minority populations NPCR--Quality National standards established by CDC to ensure completeness, timeliness and quality of data To improve quality of cancer registry data and to use data for cancer control planning, CDC: Provides technical assistance to registries to help ensure data completeness, timeliness and quality Coordinates and convenes meetings of registry personnel for information sharing, problem solving and training Helps states and national organizations use cancer data to describe state and national disease burdens, evaluate cancer control activities and identify populations at risk for certain cancers Collaborates with federal, state and private organizations to design and conduct research using data collected through state registries NPCR--Quality Additionally, in 1997, NAACCR (North American Association of Central Cancer Registries) instituted annual reviews of member registries’ abilities to produce complete, accurate and timely data and awards gold or silver recognition NAACCR-Certified U.S. Cancer Registries 2003 Collaborative Efforts of CDC-NPCR Participate in NCCCS Annual Report to the Nation on the Status of Cancer Special Projects Jointly produce annual publications of Federal Cancer Statistics B. Surveillance, Epidemiology and End Results (SEER) A program of the National Cancer Institute (NCI) SEER—NCI Goals Assemble and report, on a periodic basis, estimates of cancer incidence and mortality in the U.S. Monitor annual cancer incidence trends Provide continuing information on changes over time in extent of disease at diagnosis, trends in therapy and associated changes in patient survival Promote studies designed to identify factors amenable to cancer control interventions NCI--SEER Participants 1973 Connecticut, Iowa, New Mexico, Utah, Hawaii, Detroit, SanFrancisco-Oakland, (Puerto-Rico, through 1989) 1974-1975 New Orleans (through 1977), Seattle-Puget Sound, Atlanta 1978 10 Black, rural counties in Georgia 1980 American Indians in Arizona 1992 Los Angeles and San JoseMonterey 1992 Alaskan Natives 2001 Louisiana, Kentucky, New Jersey (1979-89) , California SEER Registries SEER Coverage Before the most recent expansion, SEER covered 14% of the U.S. population After 2001 expansion, SEER covers 26% of the U.S. population SEER database includes information on over 3 million in-situ and invasive cancer cases Approximately 170,000 new cases per year Characteristics of SEER Population Characteristics of the SEER Population* *before expansion 90 80 70 60 % 50 40 SEER US 30 20 10 0 Below Poverty HS Grad + Urban Farm Foreign Born SEER Work Scope Identify and register all cancers (in-situ and invasive) (except for basal and squamous cell carcinomas of the skin and in-situ cervical cancers—since 1992) diagnosed in residents of the coverage area from: All hospitals All pathology labs which provide cancer diagnostic services All free-standing medical facilities Offices of physicians where otherwise-unreported cases can be found SEER Work Scope Abstract: Records of resident cancer patients Death certificate cases on which cancer is listed as a cause of death Search records of private laboratories, radiotherapy units, nursing homes and other health services units Record data on newly diagnosed cancers including patient demographics, primary site, morphology, diagnostic confirmation, extent of disease and first course of treatment SEER Work Scope Provide active follow up on all living patients Maintain confidentiality of patient records Semiannually, submit data electronically to NCI SEER-NCI Authority to collect data SEER activities are conducted by non-profit, medically oriented organizations that have statutory responsibility for registering diagnoses of cancer among residents in their respective geographic coverage areas Metropolitan Detroit Cancer Surveillance System (MDCSS) Detroit arm of the SEER program Collects cancer information for the tri-county area (Wayne, Macomb and Oakland counties) About 25,000 in-situ and invasive cancers are diagnosed among residents each year Database includes information on over 531,000 cancer cases MDCSS accounts for over 44% of the SEER African-American cancer cases MDCSS (continued) Besides the usual methods of casefinding, MDCSS has linkage to State of Michigan death certificates with follow-back to hospitals, nursing homes and physician offices. After follow-back, there can be no more than 1.5% of cancers diagnosed only by a death certificate (DCO). SEER – Follow-up SEER requires current follow-up (within the last 14 months) on 95% of registry cases Other than the usual follow-up sources, there is linkage with: Voter’s registration records Dept of Motor Vehicle records CMS/HCFA Social Security Administration NDI State of Michigan death certificate records Surveys Lexis/Nexus Uses of SEER Data Aggregate data, without identifiers, are used to report cancer incidence and survival by NCI and each SEER area. These data are also available to the public Identifiable data are available ONLY with approval of the institutions/physicians providing the data Patient contact for study participation is made ONLY after notifying the patient’s physician All studies must have IRB approval On-going Studies at MDCSS Inheritance of Colon Cancer: A Sibling Pair Study – AG Schwartz Genetic Epidemiology of Lung Cancer – AG Schwartz Adenocarcinoma of the Lung in Women - AG Schwartz Genetic Epidemiology of Pancreatic Cancer – J Korczak Luminal Lipid Exposure, Genetics & Colon Cancer Risk – I Kato Does Alternative Medicine Delay Tx of Head and Neck Cancer? – I Kato Patterns of Care 2004 – I Kato Case-Control Study of Renal Cell Cancer among Caucasians & AfricanAmericans in the US – K Schwartz Assessing the Accuracy of Geocoding – K Schwartz/C Bock Surgical Tx for Early Stage Breast Cancer – S Katz/K Schwartz/JJ Graff Survey of Surgeon’s Knowledge and Attitude Towards Breast Surgery Tx Decisions – S Katz/K Schwartz/JJ Graff Assessing Smoking and Drinking in the Development of Tongue Cancer and Evaluation of Quality of Life Following Different Tx Options – A Feasibility Study – JJ Graff Labor Market Outcomes of Long Term Cancer Survivors – C Bradley/M Schenk Role of Ethnicity in Patients with Primary Malignant Brain Tumors : A Molecular Epidemiology Pilot – JB Sloan III. Our Work IS Important III. Our Work IS Important Examples of how registries have helped in the “fight against cancer” Examples registries of interesting facts about Our Efforts Have Helped High incidence of childhood cancer discovered by New Jersey Cancer Registry New York State Cancer Registry using mapping techniques to help public answer questions and concerns about cancer in their communities In Oregon, the OSCaR (Oregon State Cancer Registry), has developed protocols to address citizens concerns about cancer clusters in that state. This has resulted in the reduction of duplicative efforts among state agencies Inadequate cancer control services among people with disabilities was found through the Oregon Cancer Registry State of Maryland Cancer Registry found that 83% of oral cancers are diagnosed by non-dental personnel Discovery of Disparities in Ethnic Minority Groups Differences of new invasive cancers per year Lung and bronchial cancers in AfricanAmerican men Liver and stomach cancers in Asian/Pacific Islanders Cervical cancer in Hispanic/Latino females United Farm Workers (UFW) studied in California Our Efforts Have Helped In Many Ways Lung cancer epidemic identified by the Connecticut Tumor Registry More effective cervical cancer screening guidelines developed because of registry data in Canada Registry data used in the state of Kentucky to identify areas with late-stage breast cancer Healthy Kentuckians 2010—health action plan for Kentucky—outcomes of initiatives will be evaluated using cancer incidence data Risk of breast cancer with increasing alcohol consumption identified through a study by the state cancer registries of Maine, New Hampshire, Massachusetts and Wisconsin Michigan is investigating bladder cancer relative to arsenic exposure through drinking water Our Efforts Have Helped Alaska Native Tumor Registry reported: Cancer was rare for Alaska natives in 1950s Rate has now doubled in last 30 years Cancer is #1 cause of death among Alaskan natives Causative factors: Tobacco usage High fat diets Residents believe “agent orange” (used at the time of the building of the Alaskan pipeline) Katrina Disaster Special Registries Gilda Radner Familial Ovarian Cancer Registry National Familial Pancreas Tumor Registry Inherited Colorectal Cancer Registries UT Southwestern Familial Cancer Registry National Familial Lung Cancer Registry National Marrow Donor Program registry U.S. Dept of Health & Human Services www.hhs.gov/familyhistory On an International Level International Network for Cancer Treatment and Research (INCTR) Chernobyl Power-Plant Disaster Hiroshima and Nagasaki Danish Cancer Registry National Cancer Registry is being established in Bosnia and Herzegovina Unusual Items of Interest about Cancer Registries Tumor Registry established to look at cancer in the Flat-Coated Retriever Cancer Registries existed in Nazi Germany IV. Let the Games Begin Two Teams of Three Players A Timekeeper A Scorekeeper Please put away all of the handouts from this presentation Each Team has One Minute to Answer the Question before it is passed to the next team If the next team does not answer correctly or within one minute, then the question goes to the audience Please do not open your prize until you return to your seat MOST IMPORTANTLY—HAVE FUN! In what year was the “official” War Against Cancer declared? By Whom? What two major cancer data collection organizations have we focused on today? Which of the following are State Cancer Registries designed to do? Determine Cancer Patterns in Various Populations Guide Planning and Evaluation of Cancer Control Programs Help Set Priorities for Allocating Health Resources All of the above None of the above Cancer Registry data are critical for targeting programs focused on risk-related behaviors or environmental risk factors. Name two behavior risk factors and one environmental risk factor. Which 5 states are NOT funded by CDC—NPCR and WHY? NPCR collects information on cancer cases occurring among 96% of the U.S. population. True False What do the letters NAACCR stand for? CDC participates in the NCCCS (National Coordinating Council for Cancer Surveillance). Which other organizations also participate? American Cancer Society (ACS) National Cancer Institute (NCI) NAACCR (North American Association of Central Cancer Registries) American College of Surgeons (ACoS) National Cancer Registrars Association (NCRA) American Health Information Management Association (AHIMA) Which one of the following reports is a collaborative effort among the CDC, ACS, NAACCR and NCI? Adenocarcinoma of the Lung in Women Assessing the Accuracy of Geocoding Annual Report to the Nation on the Status of Cancer Labor Market Outcomes of Long Term Cancer Survivors In what year were the first SEER Registries started? Was Detroit one of the founding members? (Yes or No) After the 2001 expansion, ___________ covers 26% of the U.S. Population. (Name which registry this applies to.) SEER identifies and collects data on all cancer patients in the State of Michigan. True False References Centers for Disease Control—National Program of Cancer Registries www.cdc.gov Graff, John J. “The SEER Program and the Metropolitan Detroit Cancer Surveillance System”—MDCSS Copeland, G. State of Michigan Cancer Registry NIH—NCI—SEER Program www.nih.gov Various internet sites on cancer
