Transcript Strengthening Relationships Between SEER and the Michigan

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

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
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:


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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

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



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:


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
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:

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
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:

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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
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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:


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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:

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

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