Surveillance, Epidemiology, and End Results
(SEER) - Medicare Linked Database
Gerald Riley M.S.P.H.
Centers for Medicare and Medicaid
Services
Joan Warren Ph.D.
National Cancer Institute
SEER Program
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NCI has contracted with universities and state health
departments since 1973 to operate population-based
cancer registries.
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All incident cases are captured, except nonmelanoma skin cancer and in situ cervical cancer
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Recurrences not reported.
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Since 1992, 12 geographic areas, 14.5% of U.S.
population; expanded in 2001 to include 25% of U.S.
population
SEER Reporting Areas
1992 SEER
2001 SEER
Seattle/
Puget Sound
Metropolitan
Detroit
Connecticut
San Jose/
Monterey
New Jersey
IA
San Francisco/
Oakland
CA
Los Angeles
UT
KY
Atlanta
NM
LA
Hawaii
SEER Data
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SEER data have been linked for the entire time each
registry has participated in the SEER program; some
registries go back to 1973
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Each individual is assigned a unique case number
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Demographic information
age at diagnosis
race/ethnicity, sex, marital status
year and place of birth
follow-up vital status w/cause of death
SEER Data (cont.)
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For each incident cancer:
month and year of diagnosis
site of cancer
histology
behavior
grade
extent of disease  staging
surgery and adjuvant radiation given or
planned during the first course of treatment
Medicare data
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Medicare claims (all types) are available from
1991-2002, except for inpatient hospital data
that are available back to 1986
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Enrollment data
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Selected information on hospital and provider
characteristics (POS, HCRIS)
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In addition to Medicare data for persons with
cancer, the same files are available for a 5%
random sample of cancer-free individuals
who reside in the SEER areas.
Other variables available for
cancer and non-cancer cases
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Census variables at the census tract and zip
code level for:
 Median household income
 Median household wealth
 % of population with high school education
 Population density
 Urban, suburban, rural codes
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Health Care Service Area from Area Resource
File
Current update
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Linkage is updated every 3 years
Current update began Fall 2004
Preliminary match completed
Added SEER cases for 2000-2002
Added data from 4 new registries –
 Louisiana
 Kentucky
 New Jersey
 Greater California
Data from new registries will be for 2001-2002
Release date not yet scheduled
Matched cases by registry
1991 - 2002 (preliminary)
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Total
Los Angeles 1991 - 2002
Detroit 1991 - 2002
Connecticut 1991 - 2002
Seattle – Puget Sound 1991 - 2002
San Francisco – Oakland 1991 - 2002
Iowa 1991 - 2002
Greater California 2001 - 2002
Atlanta 1991 - 2002
San Jose – Monterey 1991 - 2002
New Jersey 2001 - 2002
New Mexico 1991 - 2002
Utah 1991 - 2002
Kentucky 2001 - 2002
Louisiana 2001 - 2002
Hawaii 1991 - 2002
Rural Georgia 1991 - 2002
1,647,756
290,886
193,141
167,463
157,583
156,625
149,034
104,227
71,890
71,168
66,151
58,869
52,863
30,241
28,850
44,225
4,540
Matched cases by year of diagnosis 1991 –
2002 (preliminary)
250000
200000
150000
100000
50000
0
1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002
Matched cases by selected cancer sites,
1991 – 2002 (preliminary)
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Prostate
Breast
Lung and bronchus
Colon and rectum
Urinary bladder
Non-Hodgkins lymphoma
302,898
240,426
224,429
214,826
78,620
58,996
Matched cases by selected cancer sites,
1991 – 2002 (preliminary)
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Pancreas
Ovary
Larynx
Esophagus
Brain
Liver
38,031
24,236
15,193
15,060
13,797
13,609
Examples of Studies Using
SEER-Medicare Data
Example of a Study of Post-diagnostic Surveillance
using the SEER-Medicare Data: Frequency of Cystoscopy
Following a Diagnosis of Superficial Bladder Cancer
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Patients diagnosed with superficial bladder cancer who have
not undergone total cystectomy are at high risk for recurrence
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Bladder surveillance with cystoscopy is recommended for
such patients every 3-6 months
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Investigators used the SEER-Medicare data to examine the
frequency with which these patients underwent cystoscopy
during each of five contiguous 6-month intervals from
month 7 to month 36 following diagnosis
Surveillance among Medicare Eligible Patients with
Superficial Bladder Cancer over a 30-month interval
following diagnosis, by Age Group
100
% Receiving Followup
90
80
70
60
50
65-69
70-74
75-79
80-84
85+
40
30
20
10
0
1+
2+
3+
4+
5
Number of Followups
Source: Schrag D et al. Adherence to surveillance among patients with superficial bladder cancer.
J Natl Cancer Inst. 2003 Apr 16;95(8):588-97.
Results/Conclusion
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Only 40% of the entire cohort had an examination during
all five intervals
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Exams were significantly lower for old olds, blacks and
persons living in rural areas
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The actual practice of surveillance for patients with
superficial bladder cancer differs substantially from the
standards recommended in clinical guidelines
Example of a Volume-Outcome Study Using the SEERMedicare data: Hospital and Surgeon Volume and
Outcomes following Prostatectomy
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Studies of outcomes of cancer surgery have
demonstrated variations among hospitals and
among surgeons by procedure volume
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Investigators used SEER-Medicare data to
examine variations in morbidity after radical
prostatectomy, focusing on hospital and
surgeon volume
Percentage of Patients Experiencing Late Complications
(stricture or fistula) Within One Year of Radical
Prostatectomy, by Volume of Procedures
35
30
Percent
25
20
Hospitals
15
Physicians
10
5
0
Low
Medium
High
Very High
Volume of procedures
Source: Begg CB et al. Variations in morbidity after radical prostatectomy. N Engl J Med. 2002 Apr
11;346(15):1138-44.
Results/Conclusion
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For men undergoing prostatectomy, the rates of
postoperative and late urinary complications are
significantly reduced if the procedure is performed in a
high-volume hospital and by a surgeon who performs a
high number of such procedures
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However, even with high-volume surgeons, there was
substantial variation in outcome among individual
surgeons after adjustment for hospital volume and case
mix
Limitations of SEER-Medicare data
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Does not include claims for care provided to persons in HMOs
(about 22% in SEER areas)
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Non-covered services excluded - prescription drugs, nursing
home care, free screenings
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Under 65 population includes only the disabled/ESRD
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Reasons for tests are not known; this raises challenges with
identifying screening
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Results of tests not available
How to obtain SEER-Medicare data
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SEER-Medicare are de-identified. Because of the
remote possibility of re-identification, these data are not
available as public use files.
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Researchers must submit to NCI a proposal or copy of
grant submission that describes
 Use of the data
 How data will be protected
 Investigators using the data
 SEER-Medicare data use agreement
Support for SEER-Medicare data users
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SEER-Medicare WEB site:
http://healthservices.cancer.gov/seermedicare/
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Medical Care Vol. 40, no. 8 August 2002
Supplement
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SEER web site: http://seer.cancer.gov
Publications, Manuals, Cancer Statistics,
Scientific Systems: SEER*Stat, DEVCAN, etc.
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RESDAC support for Medicare data users
http://www.resdac.umn.edu/
Funding Opportunities
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NCI Program Announcement
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http://appliedresearch.cancer.gov/funding.html
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Note: Cancer Surveillance Using Health Claims-Based
Data System
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Note: Economic Studies in Cancer Prevention,
Screening, and Care