Christina Clarke, Ph.D Northern California Cancer Center Stanford Cancer Center Maximizing the...
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Dissemination of cancer registry data: overview and critique Christina Clarke, Ph.D Northern California Cancer Center Stanford Cancer Center Maximizing the social impact of cancer registry data project kickoff meeting October 28, 2009
Christina Clarke, Ph.D Northern California Cancer Center Stanford Cancer Center Maximizing the social impact of cancer registry data project kickoff meeting
Christina Clarke, Ph.D Northern California Cancer Center
Stanford Cancer Center Maximizing the social impact of cancer
registry data project kickoff meeting October 28, 2009
Slide 2
Non-profit cancer research institute in Fremont, California; 15
PIs Population sciences group of NCI-designated Stanford Cancer
Center Mission: understanding the causes, prevention and detection
of cancer and improving the quality of life for individuals living
with cancer Operate the SEER cancer registry for nine county region
in SF/Monterey Bay Areas www.nccc.org or
cancer.stanford.edu/nccc
Slide 3
Provide orientation to SEER and other population-based cancer
registry data content, how collected and organized Summarize
efforts to disseminate data with perspective of working at regional
SEER registry Discuss challenges to changing current dissemination
practices
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All 50 states now have mandates for reporting newly diagnosed
cancers* to a regional cancer registry State registries funded by
some combination of NCI, CDC, state, and private funds 1973: NCI
funded nine regions as SEER program 1992: CDC funded National
Program for Cancer Registries in other states Represent complete
census of cancer patients for geographic area the only
population-based and therefore representative resources for
quantifying progress in war on cancer * Except basal cell and
squamous cell carcinomas of the skin
Slide 6
seer.cancer.gov 26% of the total US population 9 regions with
coverage from 1973-2006 All 18 regions with coverage 1992-2006
Slide 7
Central body sets clear standards for all procedures, data
items to be collected, and coding North American Association of
Central Cancer Registries Input from American College of Surgeons,
NCI, CDC, other professional groups At hospital: Data abstracted
directly from medical record by certified tumor registrars (CTR) At
central registry: Cases consolidated from multiple reports Myriad,
standardized quality control Finding unreported cases SEER
standards require 99% completeness
Slide 8
Patient characteristics Limited to age, sex, race/ethnicity,
address at diagnosis) Tumor characteristics Detailed anatomic site,
other pathological and clinical features Detail regarding extent of
disease spread/stage First course of treatment (in first 4 months)
Patient survival time All patients followed for vital status for
life Death status and cause of death from routine linkages with
state vital statistics National Death Index Probable living status
from routine linkages with Social security benefits National credit
agency records
Slide 9
Routinely produced Incidence rates the number of newly
diagnosed cases during a specific time period Mortality rates the
number of deaths during a specific time period More sophisticated
Prevalence new and pre-existing cases for people alive on a certain
date Survival* the proportion of patients alive at a given time
after cancer diagnosis Lifetime risk the probability of developing
or dying of cancer * Data collected only by SEER and not most state
registries
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Structured rosters of cancer statistics Rates and trends
stratified by Cancer sites or types Subpopulations of interest
(age, race, geography) Time: most current vs. trends Increasingly
available as interactive web tools Obtain detailed statistics of
interest or explore data Packaged into fact sheets and other
standalone documents Particular observations from the data
Proactive results of cancer surveillance research Reactive
responses to issues of public interest
Slide 12
NCI Snapshot of.. fact sheets
Slide 13
Cancer Stat Fact SheetsCancer Stat Fact Sheets provide a quick
overview of frequently-requested cancer statistics including
incidence, mortality, survival, stage, prevalence, and lifetime
risk. The SEER Cancer Statistics Review (CSR), 1975-2006 includes
tables showing cancer statistics by race, sex, age, and year of
diagnosis for the major cancer sites and for all cancers combined.
The report is available in both HTML and PDF formats. And, there's
a search interface to generate custom reports.SEER Cancer
Statistics Review (CSR), 1975-2006generate custom reports Fast
StatsFast Stats links to tables, charts, and graphs of cancer
statistics for all major cancer sites by age, sex, race, time
period. The statistics include incidence, mortality, survival and
stage, prevalence, and the probability of developing or dying from
cancer. A large set of statistics is available in pre- defined
formats. Cancer Query SystemsCancer Query Systems provide more
flexibility and a larger set of cancer statistics than Fast Stats
but require more input from the user. A larger number of cancer
sites are available, and you have the ability to customize the
format of the output into tables, graphs, and delimited format.
State Cancer ProfilesState Cancer Profiles is a comprehensive
system of dynamic maps and graphs enabling the investigation of
cancer trends at the national, state, and county level. Cancer
Mortality Maps and GraphsCancer Mortality Maps and Graphs shows
geographic patterns and time trends of cancer death rates for the
time period 1950-1994 for more than 40 cancers.
Slide 14
Cancer Data and Statistics Tools United States Cancer
Statistics United States Cancer Statistics The United States Cancer
Statistics: Incidence and Mortality Web-based report contains
official federal government cancer statistics for new cancer cases
and deaths. State Cancer Facts The State Cancer Facts application
provides state-specific data on lung, colorectal, female breast,
and prostate cancers, including the estimated number of new cancer
cases, cancer deaths, and the age- adjusted mortality rates for
cancer deaths by race for each state. National Environmental Public
Health Tracking Network National Environmental Public Health
Tracking Network This tool unites environmental information from
across the United States with information for some chronic
conditions, including cancer. For more information about CDC's
Environmental Public Health Tracking Network, visit CDC's feature
page.feature page. Chronic Disease Cost Calculator Chronic Disease
Cost Calculator This downloadable tool helps states estimate state
Medicaid expenditures for congestive heart failure, heart disease,
stroke, hypertension, cancer, and diabetes using customized inputs
such as prevalence rates and treatment costs. The Global Cancer
Atlas Online The Global Cancer Atlas Online The Global Cancer Atlas
Online provides color maps, graphics, and charts that contrast the
global cancer burden. It provides baseline measures by nation for
tracking cancer around the world, as well as data on prevention
strategies and cancer risk factors.
Slide 15
Explicitly targeted to public health professionals
Slide 16
Interactive cancer rate mapping sites hosted by individual
state registries
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Both sexes combined (default) Females only
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Women of all races (default) White non-Hispanic women only
Slide 20
Different agencies providing very different visualizations of
same (or different) data
Slide 21
Involves a particular observation from cancer registry data
Rapidly changing incidence trend Survival disparity among
racial/ethnic groups Analyze it in detail Describe in a scientific
manuscript Publish findings in a peer-reviewed medical journal
Standard: show visual displays (if any) separately from
communication message (in text) With journal, disseminate findings
as part of press release Work directly with media to explain
findings and relevance Visual displays probably based on scientific
version
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2001-2004 changes Overall: -9% Ages 0-49: +1% Ages 70+: -11%
Ages 50-69:-12% ER+: -15% ER-: -2% No difference by stage Limited
to first primary tumors
Slide 24
2001-2004 changes Overall: -9% Ages 0-49: +1% Ages 70+: -11%
Ages 50-69:-12% ER+: -15% ER-: -2% No difference by stage Limited
to first primary tumors
Slide 25
2001-2004 changes Overall: -9% Ages 0-49: +1% Ages 70+: -11%
Ages 50-69:-12% ER+: -15% ER-: -2% No difference by stage Limited
to first primary tumors Ted Kennedys glioblastoma
Slide 26
Produce annually a roster of local statistics Rates and trends
stratified by age, race, year, county Post on registry website in
tabular PDF files Sometimes an interactive website Rudimentary (if
any) visual displays Respond to wide array of persons requesting
data If appropriate, orient them to available online resources
State resources, State Cancer Profiles, other NCI sites Provide
customized data To a health professional or advocate needing it for
Health policy, planning, resource allocation Setting healthcare
priorities Targeting specific populations for cancer screening and
education To the local or national media Frequent requests for
sub-county level data Cancer cluster concern in a neighborhood
Denominators not generally available at this level Statistics often
unstable for small populations/rare cancers
Slide 27
Phenomenal job disseminating data to scientific audiences
Myriad powerful, interactive internet resources Little that is
appropriate for non-scientists Internet resources can be confusing
or misleading Stakes are high Data is disseminated widely at local
and national levels by media after publication in medical journals
or press release used by policy makers to make hard decisions for
prioritization and planning Annual Report to Nation is repackaged
and presented by NCI to Congress!
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Trying to serve too many masters Need different or repackaged
data tools for distinct audiences Data smog due to richness of data
For non-scientific audiences Do not consider desired response of
audience Not systematic or structured Do not consider principles of
communication science Do not consider art of visual display to
richness of data Some statistics (survival, prevalence) easy to
misinterpret Could represent an important gap in public awareness
and understanding of cancer
Slide 30
Training and orientation of cancer surveillance researchers
Epidemiology and biostatistics Little communications training
Academic scientist orientation Think about cancer data in terms of
research questions, not communication goals Poor access to experts
in communication, design Unfamiliarity with design tools other than
Microsoft products Risk aversion tendency to avoid sharing data
that might be misinterpreted Small area data Times are tough
registry budgets cut severely in many states resources diverted
away from data use back to data collection
Slide 31
Has there ever been any kind of formal needs assessment for
public regarding cancer statistics? Could existing resources be
depackaged and revised for a lay audience? Can we coordinate
information and visual display across resources: NCI, ACS, CDC? How
do we communicate variability or confidence intervals?