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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

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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

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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

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seer.cancer.gov 26% of the total US population 9 regions with coverage from 1973-2006 All 18 regions with coverage 1992-2006

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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

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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

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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

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NCI Snapshot of.. fact sheets

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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.

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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.

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Explicitly targeted to public health professionals

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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

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Different agencies providing very different visualizations of same (or different) data

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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

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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

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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 Ted Kennedys glioblastoma

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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

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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

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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

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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?

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Back page of SEER Landmark Studies document, 2003