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Dissemination of cancer registry data: overview and critique

Christina Clarke, Ph.DNorthern California Cancer CenterStanford Cancer Center

Maximizing the social impact of cancer registry data project kickoff meetingOctober 28, 2009Northern California Cancer CenterNon-profit cancer research institute in Fremont, California; 15 PIsPopulation sciences group of NCI-designated Stanford Cancer CenterMission: understanding the causes, prevention and detection of cancer and improving the quality of life for individuals living with cancerOperate the SEER cancer registry for nine county region in SF/Monterey Bay Areaswww.nccc.org or cancer.stanford.edu/nccc

Objectives of presentationProvide orientation to SEER and other population-based cancer registry datacontent, how collected and organized

Summarize efforts to disseminate datawith perspective of working at regional SEER registry

Discuss challenges to changing current dissemination practices

How and what data is collected by cancer registries in the US?

Cancer registration in the USAll 50 states now have mandates for reporting newly diagnosed cancers* to a regional cancer registryState registries funded by some combination of NCI, CDC, state, and private funds1973: NCI funded nine regions as SEER program1992: CDC funded National Program for Cancer Registries in other statesRepresent 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 skinSurveillance Epidemiology and End Results Program (SEER)seer.cancer.gov

26% of the total US population

9 regions with coverage from 1973-2006

All 18 regions with coverage 1992-2006

Data collection basicsCentral body sets clear standards for all procedures, data items to be collected, and codingNorth American Association of Central Cancer RegistriesInput from American College of Surgeons, NCI, CDC, other professional groupsAt hospital: Data abstracted directly from medical record by certified tumor registrars (CTR)At central registry:Cases consolidated from multiple reportsMyriad, standardized quality controlFinding unreported casesSEER standards require 99% completeness

Data items collected by SEER registriesPatient characteristicsLimited to age, sex, race/ethnicity, address at diagnosis)Tumor characteristicsDetailed anatomic site, other pathological and clinical featuresDetail regarding extent of disease spread/stageFirst course of treatment (in first 4 months)Patient survival timeAll patients followed for vital status for lifeDeath status and cause of death from routine linkages withstate vital statisticsNational Death IndexProbable living status from routine linkages withSocial security benefitsNational credit agency records

Cancer registry statistics Routinely producedIncidence rates the number of newly diagnosed cases during a specific time period Mortality rates the number of deaths during a specific time period More sophisticatedPrevalence new and pre-existing cases for people alive on a certain date Survival* the proportion of patients alive at a given time after cancer diagnosisLifetime risk the probability of developing or dying of cancer

* Data collected only by SEER and not most state registriesHow are these statistics disseminated by cancer registries in the US?

Two general types of data being disseminatedStructured rosters of cancer statisticsRates and trends stratified by Cancer sites or typesSubpopulations of interest (age, race, geography)Time: most current vs. trendsIncreasingly available as interactive web toolsObtain detailed statistics of interest or explore dataPackaged into fact sheets and other standalone documents

Particular observations from the dataProactive results of cancer surveillance researchReactive responses to issues of public interest

NCI Snapshot of.. fact sheets

Cancer 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.

Fast 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 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 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 Graphs shows geographic patterns and time trends of cancer death rates for the time period 1950-1994 for more than 40 cancers.

Cancer Data and Statistics ToolsUnited States Cancer StatisticsThe United States Cancer Statistics: Incidence and Mortality Web-based report contains official federal government cancer statistics for new cancer cases and deaths.

State Cancer FactsThe 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 NetworkThis 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.

Chronic Disease Cost CalculatorThis 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 OnlineThe 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.

Explicitly targeted to public health professionals

Interactive cancer rate mapping sites hosted by individual state registriesPitfalls of using interactive online tools

Both sexes combined (default)

Females onlyWomen of all races (default)White non-Hispanic women only

Different agencies providing very different visualizations of same (or different) dataDissemination of cancer surveillance research findingsInvolves a particular observation from cancer registry dataRapidly changing incidence trend Survival disparity among racial/ethnic groupsAnalyze it in detailDescribe in a scientific manuscript

Publish findings in a peer-reviewed medical journalStandard: 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 relevanceVisual displays probably based on scientific version

2001-2004 changesOverall: -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 2001-2004 changesOverall: -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

2001-2004 changesOverall: -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 glioblastomaDissemination activities at local registriesProduce annually a roster of local statisticsRates and trends stratified by age, race, year, countyPost on registry website in tabular PDF filesSometimes an interactive websiteRudimentary (if any) visual displays

Respond to wide array of persons requesting dataIf appropriate, orient them to available online resourcesState resources, State Cancer Profiles, other NCI sites

Provide customized dataTo a health professional or advocate needing it forHealth policy, planning, resource allocationSetting healthcare prioritiesTargeting specific populations for cancer screening and educationTo the local or national media

Frequent requests for sub-county level dataCancer cluster concern in a neighborhoodDenominators not generally available at this levelStatistics often unstable for small populations/rare cancers

Summary of current effortsPhenomenal job disseminating data to scientific audiencesMyriad powerful, interactive internet resources

Little that is appropriate for non-scientistsInternet resources can be confusing or misleading

Stakes are highData is disseminated widely at local and national levels by media after publication in medical journals or press releaseused by policy makers to make hard decisions for prioritization and planningAnnual Report to Nation is repackaged and presented by NCI to Congress!

Challenges and issues for changing current practice

Problems with current effortsTrying to serve too many mastersNeed different or repackaged data tools for distinct audiencesData smog due to richness of data

For non-scientific audiencesDo not consider desired response of audienceNot systematic or structuredDo not consider principles of communication scienceDo not consider art of visual displayto richness of data Some statistics (survival, prevalence) easy to misinterpret

Could represent an important gap in public awareness and understanding of cancer

Challenges to changeTraining and orientation of cancer surveillance researchersEpidemiology and biostatisticsLittle communications trainingAcademic scientist orientationThink about cancer data in terms of research questions, not communication goalsPoor access to experts in communication, designUnfamiliarity with design tools other than Microsoft products

Risk aversiontendency to avoid sharing data that might be misinterpretedSmall area data

Times are tough registry budgets cut severely in many states resources diverted away from data use back to data collection

Other thoughts for communicating with lay public 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?

Final thought

Back page of SEER Landmark Studies document, 2003