1. Quality Cancer Data Saves Lives Appathurai Balamurugan, MD, MPH Section Chief, Chronic Disease Epidemiology, Arkansas Dept. of Health Assistant Professor, Dept. of Epidemiology, UAMS COPH

2. Overview n The Story of Jane Smith n History of Cancer registration n What does Quality Cancer Data mean? n What should we strive for? Source: CDC National Program for Cancer Registries.

3. Jane Smith - Unknown to Diagnosis n Jane Smith learns from her internist that she likely has a rare form of cancer

4. Diagnosis to Prognosis n Further tests are completed at the hospital

5. Prognosis to treatment n Jane’s doctor proposes a course of treatment n Unfortunately Jane’s insurance does not cover the cost since it was considered a pre- existing condition

6. Treatment to Registry n At 4.30 p.m on a Friday before the long holiday weekend, Ms. T, a veteran cancer registrar has difficulty in finding all the information (even non-essential items, particularly ethnicity) of Jane at her hospital records. n Ms. T’s grandson has a soccer game that evening. With competing priorities in mind, Ms. T finally decides to spend another 30 minutes to complete the required fields when she could have left the field blank. n Ms. G, a central cancer registry registrar promptly enters the data after rigorous quality control.

7. Registry to National Cancer Database n Jane’s data are added to Central Cancer Registry data, and the National Cancer Data Base, where it will go through more quality processes and refinement

8. National Cancer Database to Policy n Dr. B analyzes this rare form of cancer and finds disparity among Ms. Jane’s ethnicity and makes a recommendation to a local congressman n Congressman supports a legislation that would allow coverage for the rare form of treatment even if pre-existing. n Jane receives treatment and survives cancer, later to become an airline pilot

9. Cancer data saving lives n Few months later, Jane, a pilot now saves a commuter plane which had some mechanical problems, with all its 138 passengers from a crash n Among the survivors were Ms. T, Ms. G and Dr. B’s spouses!! n Surely Quality cancer data did save lives!

10. Cancer Information is Used to Improve Prevention, Research, and Care

11. Evaluate patient outcome, quality of life, and satisfaction issues and implement procedures for improvement Cancer information is used in thousands of ways, including —

12. Evaluate efficacy of treatment modalities

13. Provide cancer burden information for cancer surveillance

14. Report cancer incidence as required by state and federal laws

15. Trends in Five-Year Relative Survival Rates Calculate survival rates by various data items, such as sex, race, and age

16. Provide information for cancer prevention activities

17. Analyze referral patterns

18. Allocate resources at local, state, and national levels

19. Develop educational programs for health care providers, patients, and the general public

20. Cancer data forms much of the body of knowledge used by medical professionals, epidemiologists, policymakers, and public health officials

21. Kentucky Thousands of lives were saved in Kentucky through early detection of breast cancer

22. Arizona Careful analysis leads to broader cancer screening efforts in northeastern Arizona

23. Minnesota In Minnesota, a rare type cancer caused by asbestos exposure was identified, leading the state to look for increased state funding for occupational-related disease

24. Kansas Cancer registry data identified a lack of cancer care facilities

25. New York Cancer registry data are now used to educate New Yorkers about cancer risk factors

26. Arkansas Arkansas Central Cancer registry data was used as a supportive evidence for the Arkansas Clean Indoor Act passed in 2006.

28. History of Cancer Registration

30. 1629 Cancer recorded as a cause of death 1839 Death registration in the U.S.

31. 1923 First U.S. Cancer Registry launched

32. 1932 First Central State registry – Connecticut 1956 ACoS CoC requires cancer programs to have registries

33. 1971 1974 Nationwide cancer registrations begins National Cancer Act establishes SEER Program

34. 1974 NCRA Chartered 1983 NCRA begins administering CTR examination

35. 1975 ArCRA Chartered!!

36. 1990 NAACCR established

37. 1992 NPCR created by Cancer Registries Amendment Act 1996 ACoS CoC requires data submission to NCDB

38. What does Quality Cancer Data mean?

39. National data are only as good as state and local data Health care providers record patient information and diagnosis Hospital-based cancer registrar abstracts patient information into uniform data sets and checks for an existing record for each patient Patient data are aggregated on a state level, and then sent to national registries (SEER or NPCR)

40. Inaccurate data are useless, expensive, and often harmful

41. Ensuring accuracy is a team effort

42. The Cancer Registrar is a key member of health care team

43. n Edit the data from all facilities n Query the database for data quality reports n Merge duplicate records n Audit healthcare facilities to insure accurate, timely, complete data Registrars in Central Cancer Registries Ensure Quality Data

44. n Work with researchers n Contribute to data analysis for cancer program planning n Provide education and training for registrars Registrars in Central Cancer Registries Ensure Quality Data

45. Enhancing Data Systems to Improve the Quality of Cancer Care - IOM recommendations - n Enhance key elements of the data system infrastructure (i.e., quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity). n Expand support for analyses of quality of cancer care using existing data systems. n Monitor the effectiveness of data systems to promote quality improvement within health systems.

46. Source: www.statecancerprofiles.cancer.gov

47. Top 10 Cancer-related deaths in Arkansas and the US Source: US Cancer Statistics, www.cdc.gov

48. Incidence of All Cancers in Arkansas and the US, All Race and Gender, 1980- 2004 Source: www.statecancerprofiles.cancer.gov & Arkansas Central Cancer Registrywww.statecancerprofiles.cancer.gov

49. Top 10 New cancer diagnosis in Arkansas and the US Source: US Cancer Statistics, www.cdc.gov

50. Issues in our effort to conquer Cancer n Disparities in the burden of cancer n Differential access to screening, diagnosis and treatment n Behavioral factors to prevent the risk of cancer n Factors affecting cancer survival

51. Challenges in our effort n Non-essential items, which are critical – Tobacco use Screening tests Race/Ethnicity County/City/Zip Code

52. Where are we? 2004 NAACCR Data Quality Indicators n Case ascertainment – 92.2% (>95%) n Completeness of information recorded - 0.0-0.6% (< 3% (age at diagnosis, sex, race, state/county) n Death certificate only cases - 0.4% ( <3%) n Duplicate primary cases - 0.4 per 1000 (<1) n Passing EDITS - 100% (100%) n Timeliness - 23 months

53. Where we strive to be? Gold! Gold! Gold! n Tier 3 – NPCR n Tier 2 – NAACCR n Tier 1 - SEER

54. Ain’t no mountain high enough Ain’t no river wide enough To keep us from getting high quality cancer data! - NAACCR slogan -