Dissemination of cancer registry data: overview and critique

1. 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

2. Northern California Cancer Center Non-profit cancer research institute in Fremont, California; 15 PI’s 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

3. Objectives of presentation • 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

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

5. Cancer registration in the US * Except basal cell and squamous cell carcinomas of the skin • 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

6. Surveillance Epidemiology and End Results Program (SEER) 26% of the total US population 9 regions with coverage from 1973-2006 All 18 regions with coverage 1992-2006 seer.cancer.gov

7. Data collection basics • 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

8. Data items collected by SEER registries • 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

9. Cancer registry statistics * Data collected only by SEER and not most state registries • 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

10. How are these statistics disseminated by cancer registries in the US?

11. Two general types of data being disseminated • 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

12. NCI “Snapshot of..” fact sheets

13. 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.

14. Cancer Data and Statistics Tools United 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 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 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.

15. Explicitly targeted to “public health professionals”

16. Interactive cancer rate mapping sites hosted by individual state registries

17. Pitfalls of using interactive online tools

18. Both sexes combined (default) Females only

19. White non-Hispanic women only Women of all races (default)

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

21. Dissemination of cancer surveillance research findings • 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

23. 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

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

25. Ted Kennedy’s glioblastoma 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

26. Dissemination activities at local registries • 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

27. Summary of current efforts • 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!

28. Challenges and issues for changing current practice

29. Problems with current efforts • 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

30. Challenges to change • 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

31. 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?

32. Final thought Back page of SEER Landmark Studies document, 2003