Strengthening Relationships Between SEER and the

Michigan Cancer Surveillance Program

Carole Eberle, BS, CTR, RHIA, RHIT

October 13, 2005Michigan Cancer Registrars Association

Annual Educational ConferenceSault 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 CancerNational 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, RHITState/SEER Coordinator

eberlec@michigan.gov

Kari Borden, AA, CTR, RHITQuality Assurance Field Representative

bordenk@michigan.gov

II. We Are All In This TogetherA. 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

StateNPCR/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

NPCRPurpose

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 (continued) to 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 CancerSpecial ProjectsJointly 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 Jose-

Monterey 1992 Alaskan Natives 2001 Louisiana, Kentucky, New Jersey

(1979-89) , California

SEER Registries

SEER RegistriesSEER Registries

Utah ‘73Iowa ‘73

Detroit ‘73

Connecticut ‘73

Seattle-Puget Sound ‘74

Atlanta ’75

New Jersey ‘01

Kentucky ‘01

Louisiana ‘01

New Mexico ‘73

Arizona ‘80

Alaska ‘92

Hawaii ‘73

San Francisco-Oakland ‘73

Los Angeles ‘ 92

Greater CA ‘01

Rural Georgia ‘78

San Jose-Monterey ‘92

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

C h a ra c te r is t ic s o f th e S E E R P o p u la t io n *C h a ra c te r is t ic s o f th e S E E R P o p u la t io n **b e fo re e x p a n s io n*b e fo re e x p a n s io n

0

1 0

2 0

3 0

4 0

5 0

6 0

7 0

8 0

9 0

%

B e lo wP o v e rty

H S G ra d+

U rb a n F a rm F o re ig nB o rn

S E E RU S

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-NCIAuthority 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 & African-Americans

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 of interesting facts about registries

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 African-

American 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 RegistriesGilda Radner Familial Ovarian Cancer

RegistryNational Familial Pancreas Tumor

Registry Inherited Colorectal Cancer RegistriesUT Southwestern Familial Cancer

RegistryNational 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 NagasakiDanish Cancer RegistryNational 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

PopulationsGuide Planning and Evaluation of

Cancer Control ProgramsHelp Set Priorities for Allocating Health

ResourcesAll of the aboveNone 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. TrueFalse

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 WomenAssessing the Accuracy of GeocodingAnnual Report to the Nation on the

Status of CancerLabor 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.

TrueFalse

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