Cancer Registries and Medical Records Rich Data Resources

1. Cancer Registries and Medical Records Rich Data Resources Carol Lowenstein, MBA, CTR Assistant Director Survey and Data Management Core Dana-Farber Cancer Institute Co-Coordinator, Survey & Statistical Methods Core

2. Objectives • Describe cancer registries • Review the history of cancer registries – why we collect data • Review the types of registries and data available • Understand the varied uses of registry data – where to go, what to use, and the limitations • Explore the value added through linkages of registry data with other data sources • Discuss medical record review vs. cancer registry data • Describe medical record review

3. What Is a Cancer Registry? • Information system designed to: • Collect • Manage • Analyze data on persons with the diagnosis of a malignant or neoplastic disease (cancer). • Cancer registries can be classified into three general types: • Hospital based registries: maintain data on all patients diagnosed and/or treated for cancer at their facility and report cancer cases to the central or state cancer registry as required by law. • Population-based central registries: maintain data on all cancer patients within certain geographical areas. • Special purpose registries: maintain data on a particular type of cancer, such as brain tumors. Source: National Cancer Registrars Association

4. What Is a Cancer Registry? • Registry data is: • Used to make public health decisions • A valuable research tool for those interested in the etiology, diagnosis and treatment of cancer • Used in fundamental research on the epidemiology of cancer Source: National Cancer Registrars Association

5. What Is a Cancer Registry? • Information maintained in a cancer registry: • Demographic Information: Age, gender, race/ethnicity, birthplace and residence. • Medical History: Physical findings, screening information, occupation and any history of a previous cancer. • Diagnostic Findings: Types, dates and results of procedures used to diagnose cancer. • Cancer information: Primary site, cell type and extent of disease. • Cancer Therapy: Surgery, radiation therapy, chemotherapy, hormone or immunotherapy. • Follow-up: Annual information concerning treatment, recurrence, and patient status is updated to maintain accurate surveillance information. Source: National Cancer Registrars Association

6. What Is a Cancer Registry? How are these data used? • Evaluate patient outcome, quality of life, and satisfaction issues and implement procedures for improvement • Provide follow-up information for cancer surveillance • Calculate survival rates by various data items • Provide information for cancer program activities • Analyze referral patterns • Allocate resources at the health care facility, the community, region or state level • Develop educational programs for health care providers, patients and the general public • Report cancer incidence as required under state law • Evaluate efficacy of treatment modalities Source: National Cancer Registrars Association

7. History of Cancer RegistriesKey Events 2500 B.C. • Earliest known description of "cancer": the "Edwin Smith" and "George Ebers" papyri which describe surgery, pharmacology, and mechanical and magical treatments 400 B.C. • Hippocrates described a breast "cancer" as "karkinoma" (known now as carcinoma) during surgical removal of a tumor 1629 A.D. • Cancer is first mentioned as a cause of death in the Bills of Mortality in England 1728 • London's "General Census of Cancer" - the first known systematic collection of information on cancer is generated Source: NCI SEER Program

8. History of Cancer RegistriesKey Events 1839 • Implementation of death registration (what we now know as "death certification") in the United States 1901 • Earliest known population-based systematic collection of data on people with leprosy in Norway (a population-based leprosy registry) 1926 • A bone sarcoma registry established by Dr. Ernest Codman at Massachusetts General Hospital, one of the earliest registries established for a specific type of cancer • The first hospital-based cancer registry at Yale-New Haven Hospital was organized in New Haven, Connecticut Source: NCI SEER Program

9. History of Cancer RegistriesKey Events Ernest Amory Codman, M.D • Kept track of his patients with End Results Cards • Tracked the outcomes of patient treatments • Identified areas of improvement in patient care • Believed that this information should be made public • and that this, not seniority, be the basis for • physician promotion • Help found the American College of Surgeons and • the Joint Commission on Accreditation of • Healthcare Organizations Source: Countway Medical Library

10. History of Cancer RegistriesKey Events 1935 • First population-based cancer registry in the United States established in Connecticut 1956 • The American College of Surgeons requires a cancer registry as a component of an approved cancer program 1971 • The U.S. National Cancer Act budgets monies to the National Cancer Institute for research, detection, and treatment of cancer 1973 • The Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national cancer registry program Source: NCI SEER Program

11. History of Cancer RegistriesKey Events 1992 • U.S. Public Law 102-515 establishes the National Program of Cancer Registries (NPCR) and is administered by the US Centers for Disease Control and Prevention (CDC) 1993 • Many state laws make cancer a reportable disease Source: NCI SEER Program

12. History of Cancer RegistriesCancer Registration • Late 16th Century Prompted by the seemingly random geographic ravages of the plague, the English Crown appointed elderly, epidemic-scarred women to prowl the countryside in search of the dead and dying. These 'Ancient Matrons' published weekly 'Bills of Mortality' for each parish, tabulating deaths by causes such as 'the purples' (probably leukemia), 'riting of the lights', 'consumption' (often an effect of cancer), and of course, the plague. Just how this information was used is not recorded. Perhaps the royalty found it helpful to determine where the plague was active so they could be somewhere else Source: NCI SEER Program

13. History of Cancer RegistriesCancer Registration • Mid 17th Century Around 1665 a London businessman, John Graunt, created medical history by subjecting decades of mortality data to critical and mathematical analysis. He literally invented the science of medical epidemiology and statistics, publishing a pamphlet with 108 conclusions. The list included such revolutionary observations as the facts that women saw physicians twice as often as men yet lived longer, and plague epidemics moved outward from swampy areas. Graunt also was the first person to use mortality statistics to project population survival, probably by crudely fitting data samples to a logarithmic curve. Source: NCI SEER Program

14. History of Cancer RegistriesCancer Registration • Early 1900’s • Bone sarcoma registry at MGH • Yale-New Haven Hospital Cancer Registry • Other hospitals began to develop registries as physicians saw the benefits of comprehensive data collection • Connecticut population-based cancer registry

15. History of Cancer RegistriesCancer Registration • 1937-39 • First National Cancer Survey • Initiative of the newly formed NCI • Directed by Harold F. Dorn • Included only MD dx’d cases, histolgic confirmation • 3 regions of the US – north, south, west • 10 registries in metropolitan areas, MD abstractors • Included 10% of the overall population, • Resulted in several papers • Sparked questions about genetic factors, racial, gender and economic disparities Harold F. Dorn Source: Lilienfeld, Am J Public Health, Dec 2008

16. History of Cancer RegistriesCancer Registration • 1947-48 • Second National Cancer Survey • 1956 • American College of Surgeons Commission on Cancer (CoC) requires hospital cancer registries for Commission approved cancer programs • 1967-71 • Third National Cancer Survey

17. History of Cancer RegistriesCancer Registration • 1973 • SEER Registry • 1992 • NPCR funding for state cancer registries

18. History of Cancer RegistriesCancer Registration • What were they trying to achieve? • A standard classification of disease • A systematic form of data collection • Analysis and use of the data

19. Sources of Cancer Registry Data • Levels of registries • Hospital • Central • National • International

20. Sources of Cancer Registry Data • Data collected using ICD-O • Based on ICD-9 codes • Separate codes for site (T – topography codes) and histology (M – morphology codes) • Coding manual • Topography numerical • Morphology numerical • Alphabetic index

21. Sources of Cancer Registry Data • Reliance on data standards • Each data item collected has a very specific set of rules • Edits • Developed by national organizations • Applied at hospital and central levels

23. Sources of Cancer Registry Data • Hospital Cancer Registries • Massachusetts Cancer Registry (MCR) • North American Association of Central Cancer Registries (NAACCR) • Surveillance Epidemiology and End Results (SEER) • International Agency for Research o Cancer (IARC)

24. Hospital Cancer Registries • Cancer Reporting Law in MA • Variability in Size • Collect a large data set established by national organizations • Sophisticated edits process

25. Hospital Cancer Registries • Demographic Data • Address, age, gender, race, ethnicity, insurance, census tract, birthplace, occ/ind, tobacco/alcohol hx, family hx • Tumor Data • Primary site, histology, grade, stage, laterality • Treatment Data • Surgery, chemo, XRT, hormone, BRM • Vital Status- Follow up Data • Report to the state/central registry • Within 6 months to 1 year after diagnosis – capture first course of treatment

26. Hospital Cancer Registries • Quality of data • Varies • ACoS vs non-ACoS approved programs • Size of hospital • Teaching/research vs. community hospital • Involvement and interest of MD’s and administration • Standardized data collection software • Standard edits developed by national organizations

27. Hospital Cancer RegistriesData Produced • ACos required studies • Requirement of ACoS approval • Site specific • Quality and outcomes focused • Patient care improvements • Annual report • Administrative reports • Ad-hoc reports/requests for data

28. Questions Answered With Hospital Cancer Registry Data • Who are we serving? • Where are patients coming from? • How were they referred to our facility? • Was access a problem? • How sick are they when they’re diagnosed? • How are they treated? • How well do they fare compared to others? • Do we have adequate numbers to support various clinical trials?

29. American College of Surgeons – National Cancer Database (NCDB) • Joint program of the ACoS Commission on Cancer (CoC) and the American Cancer Society • Nationwide oncology outcomes database for more than 1,500 Commission-accredited cancer programs in the United States and Puerto Rico • 70 percent of all newly diagnosed cases of cancer in the United States are captured at the institutional level and reported to the NCDB • Primarily used by CoC-accredited cancer programs as a means by which to evaluate and compare the cancer care delivered to patients diagnosed and/or treated at their facility with that provided at state, regional, and national cancer facilities

30. Massachusetts Cancer Registry • Population based state cancer registry • Data from 1982 • Massachusetts Population – 2010 • Total: 6,547,629 • White: 80.4% • Black: 6.6% • American Indian/Alaskan Native: 0.3% • Asian: 5.3% • Native Hawaiian-Other Pacific Islander: 0.0% • Reporting two or more races: 2.6% • Latino or Hispanic Origin: 9.6% • White, not Hispanic: 76.1%

31. Massachusetts Cancer Registry

32. Massachusetts Cancer Registry • Data collected – same data items as hospital data set • Provides the Abstracting and Coding Manual for Hospitals • Consolidation of information from all reporting sources • Incidence data – each tumor (occurrence of cancer) counted once • Primarily reported from hospitals • Some outpatient/path lab reporting • Data stored at multiple levels • Patient level data • Tumor level data • Treatment level data

33. Massachusetts Cancer Registry Patient A Name Address Age etc. Tumor 1 Site Histology Stage etc. Tumor 2 Site Histology Stage, etc. Treatment A CTX Treatment B Surgery Treatment A CTX Treatment B XRT

34. Massachusetts Cancer RegistryConsolidation Process • Algorithms to dictate • Match • Non-match • Review • Consolidation rules • Multiple primary rules • Lymphomas and leukemias • Laterality • Benign vs. malignant

35. Massachusetts Cancer RegistryConsolidation Process Patient A Hospital 1 Patient A Hospital 2 Name: Jones Name: Jonnes Primary Site: LLL Lung Histology: Small cell Primary Site: LUL Lung Histology: Adenoca

36. Massachusetts Cancer RegistryConsolidation Process Hospital A Name: Jones Primary site: LLL Lung Histology: Small Cell Consolidated Patient Record Name: Jones Consolidated Tumor Record Site: LLL Lung Histology: Adneoca Hospital B Name: Jonnes Primary site: LUL Lung Histology Adenoca

37. Massachusetts Cancer RegistryConsolidation Process • Very time consuming! • Always looking for ways to further automate • Also involves real-time edit resolution • Males with endometrial ca • Impossible/rare site-histology combinations • Age flags

38. Massachusetts Cancer RegistryData - Reports • Two main reports: • Cancer Incidence and Mortality in Massachusetts   • The City/Town Supplement • Special reports • Cervical and Uterine Cancers in MA • Cancer Incidence and Mortality in Boston Neighborhoods • Childhood Cancers in MA • Cancer in MA by Race and Ethnicity • … and more on their website

39. Massachusetts Cancer RegistryData - Reports • MassCHIP - Massachusetts Community Health Information Profile • Online access to health and social indicators • http://www.mass.gov/dph/masschip • Linkages and data requests • Linkages with data sets provided to them • Approval for all data requests by the MDPH Human Research Review Committee

40. Massachusetts Cancer RegistryData - Reports • MCR website: www.mass.gov/dph/mcr

41. Questions Answered With Massachusetts Cancer Registry Data • What is the race, gender, age breakdown for cancers in the state? • What do certain areas look like in terms of cancer type and demographic variables? • How does our hospital population compare to the state in terms of stage at diagnosis? • Are there sufficient numbers of patients to justify a new service or to open a trial?

42. North American Association of Central Cancer Registries • Promotes uniform data standards • Provides education and training; certifies population-based registries • Gold and Silver status • Aggregates and publishes data from central cancer registries • Promotes the use of cancer surveillance data

44. North American Association of Central Cancer Registries • All central cancer registries in the United States and Canada are members • Cancer In North America (CINA) • Published annually • Contains: general demographic information about each state, data quality indicators, site specific incidence rates • Individual states • US Combined Report

45. North American Association of Central Cancer Registries - Reports • Cancer Incidence in North America (CINA) Monographs - four published volumes of cancer statistics for a five-year period • CINA+ Online - an on-line query system utilizing CINA data • CINA Monograph Data in SAS Data Set - published data in CINA Monograph (all four volumes) available for use in SAS • CINA Plus in SEER*Stat - data from CINA+ Online that are available in SEER*Stat software, allowing more flexible queries and statistical testing. Only available to NAACCR members or collaborators with NAACCR members. • CINA Deluxe - a multi-registry NAACCR members analytical data file for cancer researchers that includes more detailed data variables and groupings. Only available to NAACCR members or collaborators with NAACCR members.

46. CDC National Program of Cancer Registries (NPCR) • Established by Congress through the Cancer Registries Amendment Act in 1992 • Provided funding, supplemental and start up, to state cancer registries • Contracted with NAACCR to provide guidance in the areas of data standards and quality control • In collaboration with the NAACCR, produce the United States Cancer Statistics: Incidence and Mortality report

47. NPCR - Program Contacts by Funding Status

48. NCI SEER • Data from 18 population based central cancer registries • Covers approximately 26% of the US population • 23.4% of Whites • 22.7% of African Americans • 40.4% of Hispanics • 42.2% of American Indians and Alaska Natives • 53.3% of Asians • 69.8% Hawaiian/Pacific Islanders

49. NCI SEER

50. NCI SEER