Quality Cancer Data Saves Lives The Vital Role

Quality Cancer Data Saves Lives The Vital Role of Cancer Registrars in the Fight against Cancer

18 Million

1. 5 million

67%

Cancer Registries Statistics n Treatment strategies n Public health initiatives n

United States Cancer Statistics 2008

Goal The ultimate goal of collecting cancer information is to prevent and control cancer and improve patient care

Result Assist physicians in assessing the efficacy of diagnostic and therapeutic methods

Result Aid in the decision making about unmet needs, physician recruitment, space needs, resource allocation, and health planning

Result Respond to local needs through an assessment of referral patterns, cancer trends, and development opportunities

Cancer Registries collect a wide range of cancer-related information; including — n Demographics

Cancer-related Information Medical history n Diagnosis and prognosis indicators n Treatment patterns n Cancer recurrence n Survival rates n Health care coverage n Patient eligibility n

Different Kinds of Cancer Registries

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 is aggregated on a state level, and then sent to national registries (SEER or NPCR)

Hospital Cancer Registry

State Cancer Registry

National Cancer Data Base http: //www. facs. org/cancer/ ncdb/index. html

Surveillance Epidemiology and End Results Program (SEER) http: //seer. cancer. gov/

1973+ 9 States, 6 Metro Areas 28% of population coverage

National Center for Health Statistics Cancer mortality comes from State Health Depts. to the CDC’s NCHS

National Program of Cancer Registries

National Program of Cancer Registries NPCR* Seattle/Puget Sound SEER † NPCR & SEER Detroit CT IA San Francisco/ Oakland San Jose/ Monterey N J UT CA KY Los Angeles NM Atlanta LA HAWAII ALASKA Pacific Islands Jurisdiction PUERTO RICO *National Program of Cancer Registries (CDC) Epidemiology, and End Results Program (NCI) †Surveillance,

NPCR is expanding efforts to improve and use cancer data by: Providing technical assistance to registries to help ensure data completeness, timeliness, and quality

Coordinating and convening meetings of registry personnel for information sharing, problem solving, and training

Helping states and national organizations use cancer data to describe state and national disease burdens, evaluate cancer control activities, and identify populations at risk for certain cancers

Collaborating with federal, state, and private organizations to design and conduct research using data collected through state registries

CDC: National Standards n CDC has established national standards to ensure the completeness, timeliness, and quality of Cancer Registry data

NPCR provides national leadership to Cancer Registries NAACCR Certified State Registries 2011 • • • Gold Silver Black- did not meet certification requirements

Today, NPCR and SEER registries work collaboratively to collect and report cancer statistics on the entire U. S. population. http: //www. cdc. gov/cancer/ npcr/uscs/

International Association of Cancer Registries

How Registries Collect Cancer Data

The techniques used by Cancer Registrars allow for uniform data collection. http: //www. naaccr. org/

Standard setting organizations provide guidance and direction to the Cancer Registrar

A patient’s file, or abstract, contains many different sections and fields

Abstracting is converting a patient’s medical information to uniform cancer data

Electronic Medical Records

Cancer Registries have embraced technology

Cancer Registries exist within a national framework of health monitoring and data collection

History of Cancer Information

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

1923 First U. S. Cancer Registry launched

1932 First Central State registry – Connecticut 1956 ACo. S Co. C requires cancer programs to have registries

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

1974 NCRA Chartered 1983 NCRA begins administering CTR examination

1990 NAACCR established

1992 NPCR created by Cancer Registries Amendment Act 1996 ACo. S Co. C requires data submission to NCDB

The Flow of Cancer Information: A Case Study

Diagnosis to treatment n Jane Smith learns from her internist that she likely has breast cancer

Diagnosis to treatment n Further tests are completed at the hospital

Diagnosis to treatment n Jane’s doctor proposes a course of treatment

Diagnosis to treatment n Follow-up tests show Jane to be cancer free

Diagnosis to treatment n Jane’s data is added to other SEER and Michigan central Cancer Registry data, and the National Cancer Data Base, where it will go through more quality processes and refinement

Diagnosis to treatment n The Cancer Registrar will regularly followup

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

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

Evaluate efficacy of treatment modalities

Provide outcome information for cancer surveillance http: //www. cdc. gov/cancer/ npcr/uscs/

Report cancer incidence as required by state and federal laws http: //www. ccrcal. org/pdf/ Reports/Physicians. pdf

Trends in Five-Year Relative Survival Rates Estimated Numbers of US Cancer Survivors by Sex and Time Since Diagnosis as of January 1, 2012 Male Time since diagnosis Number Percent Cummulative Percent Female Number Percent Cummulative Percent 0 to <5 years 2, 608, 320 40% 2, 339, 950 32% 5 to <10 years 1, 628, 010 25% 65% 1, 595, 410 22% 54% 10 to <15 years 997, 060 15% 80% 1, 135, 160 16% 70% 15 to <20 years 570, 290 9% 89% 791, 880 11% 81% 20 to <25 years 305, 140 5% 94% 536, 670 7% 88% 25 to <30 years 154, 470 2% 96% 343, 300 5% 92% 30+ years 179, 010 3% 499, 210 7% 100% Note: Percentages may not sum to 100% due to rounding. Source: Data Modeling Branch, Division of Cancer Control and Population Sciences, National Cancer Institute. Calculate survival rates by various data items, such as sex, race, and age

Provide information for cancer prevention activities

Analyze referral patterns

Allocate resources at local, state, and national levels

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

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

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

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

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

Kansas Cancer registry data identified a lack of cancer care facilities

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

Cancer Registries and the Fight Against Cancer For more examples of registry data visit the NPCR Web Site http: //www. cdc. gov/cance r/npcr/success/index. htm

Cancer Registrars Ensure Accuracy and Privacy

Inaccurate data is useless, expensive, and often harmful

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 National data is only as good as state and local data Patient data is aggregated on a state level, and then sent to national registries (SEER or NPCR)

Ensuring accuracy is a team effort

Privacy concerns are paramount to Cancer Registrars

Cancer Registrars: A challenging career requires quality education, and certification

High quality data results from trained specialists: Cancer Registrars

Cancer Registrars not only record data, they find and interpret it

The Cancer Registrar must have comprehensive knowledge about cancer diagnoses, treatment, and information management

Education for Health Information Management Professionals and Cancer Registrars are similar

The Cancer Registrar is a key member of health care team

Hospital-based Registrar’s Role Goes Beyond Data Collection Cancer Program Management n Cancer Committee Member n Monitor quality of Cancer Program Management n Provide benchmarks for quality comparison n

Hospital-based Registrar’s Role Goes Beyond Data Collection Data Analysis for Studies n Compiling Cancer Program Annual Report n Assess referral patterns n

Hospital-based Registrar’s Role Goes Beyond Data Collection Participate in cancer prevention n Present information to cancer committee, physicians, administration n

Registrars in Central Cancer Registries are Key Players in Ensuring Quality Health Care 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 n

Registrars in Central Cancer Registries are Key Players in Ensuring Quality Health Care Work with researchers n Contribute to data analysis for cancer program planning n Present data to the local community, schools, and others n Provide education and training for registrars n

How Does One Become a Cancer Registrar?

Formal Education Programs Produce Excellent Cancer Registrars

CTRs have pursued higher education Some college, associates, bachelors

NCRA’s requirements for approval of formal education curricula include: Cancer and its management n Medical terminology n Anatomy and physiology n Biostatistics and epidemiology n Cancer data abstracting n Database record management n Cancer program management n Cancer registry procedures n

Other educational opportunities: Intensive trainings on specific subjects n On-the-job training n Online resources, including NPCR and SEER training modules n http: //www. training. seer. cancer. gov n SEER Self-Instructional Manuals http: //seer. cancer. gov/training/manuals

Certification of Cancer Registrars

Certification ensures quality results

Additional benefits: certification Establishing a standard of knowledge and competence n Measuring the requisite knowledge, skills and abilities of CTR® applicants n Promoting professional growth and individual study n Formally recognizing CTRs who meet recertification requirements n

Candidates who meet eligibility requirements and pass the CTR examination are awarded the CTR credential. NCRA’s Council on Certification sets the certification standards.

What are the eligibility requirements for certification? n Minimum education of an Associate’s degree n Practical experience

Route A n Successful completion of an NCRAaccredited degree program OR an NCRA-accredited certificate program PLUS an Associate degree or equivalent, AND 160 -hour practicum.

Route B n Completion of an Associate degree or equivalent (60 collegelevel credits) including or in addition to two semesters of college-level “Human Anatomy and Physiology” coursework, AND 1, 950 hours (equivalent to one year) of Cancer Registry experience.

CTR Exam Resources Council of Certification Website: http: //www. ctrexam. org n Eligibility: http: //www. ctrexam. org/eligibility n

CTR Examination Content Registry organization and operations n Anatomy, physiology, and histology of the human body n Abstracting and coding of cancer data items n

CTR Examination Content Statistical techniques, study design and report preparation n Practical application of registry principles n Computerized data management n

NCRA’s Council on Certification’s Mission n To create and maintain credentialing processes whereby the public can be assured that individuals certified by NCRA have met a level of competence required to provide accurate information for cancer surveillance and research activities

NCRA’s Certification Examination In 1983, the National Tumor Registrars Association (now NCRA) administered the first certification examination for tumor registry professionals.

Rapidly changing technology and treatment options necessitate continuing education

NCRA: Resources for Registrars

NCRA represents Cancer Registry professionals and CTRs

NCRA Mission Statement n Serve as the premier education, credentialing and advocacy resource for cancer data professionals.

NCRA Vision Statement n Improving lives through quality cancer data management

NCRA Core Values n Networking, Mentoring, and Making a Difference

NCRA offers: Multiple educational and networking opportunities n Annual national conference to build knowledge and expertise n Promotion of professional standards and ethics n

NCRA offers: Management of the CTR process and NCRA’s Council on Certification n Publication of a peerreviewed scientific journal and a quarterly newsletter n

NCRA offers: A Web site offering a wide range of publications and information about educational opportunities n http: //www. ncra-usa. org* n

Cancer Registry is a Dynamic Profession

Cancer Registry is a dynamic profession Registrars are dedicated, enthusiastic, and self motivated professionals n Registrars work closely with physicians and administrators n

Cancer Registry is a dynamic profession Registry data make a difference in patient care and cancer research n Registrars perform a wide variety of interesting tasks, including data analysis n

Cancer Registry is a dynamic profession The profession offers regular work day hours with holidays and vacations n There is minimal supervision required for self motivated registrars n

Cancer Registry careers are rewarding Masters Degree $55, 000 $39, 000 Associates Degree

Cancer Registrars Have Many Career Opportunities n n n Hospitals and Health Care Facilities Software Vendors Government Agencies Pharmaceutical Companies Outsourcing or Contract services

You and Cancer Registries: A Smart Choice for a Bright Future