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 Treatment strategies Public health initiatives 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 — Demographics Cancer-related Information Medical history Diagnosis and prognosis indicators Treatment patterns Cancer recurrence Survival rates Health care coverage Patient eligibility 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 Center for Health Statistics Cancer mortality comes from State Health Depts. to the CDC’s NCHS Surveillance Epidemiology and End Results Program (SEER) http://seer.cancer.gov/ National Program of Cancer Registries 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/ NPCR provides national leadership to Cancer Registries NAACCR Certified State Registries 2011 • • • Gold Silver Black- did not meet certification requirements 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 CDC has established national standards to ensure the completeness, timeliness, and quality of Cancer Registry data National Cancer Data Base http://www.facs.org/cancer/ ncdb/index.html 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 Last Name: Place of Birth: Soc Sec #: Span/Hisp Orig: Doe 25 123-45-6789 0 PATIENT INFORMATION Jane Middle Name: 4111946 Age: 2 Race: 21 Primary Payer: Sue 58 1 10 Facility ID#: Med Rec #: Date Last Contact: Cancer Status: 4749421 3344221 11152004 1 Address at Diagnosis: 58 42790 Physicians: Jones Johnson Class of Case: Seq No: Date 1st Contact: Year 1st Seen: Fac Ref From: Fac Ref To: Reg LN Exam: Reg LN Pos: 1 Jones Smith King Other: ___________________ CANCER INFORMATION & DIAGNOSIS 5012004 Primary Site Text: R Breast UOQ Prim Site Code: C50.4 Comorb/Comp 1: Comorb/Comp 2: Comorb/Comp 3: Comorb/Comp 4: Comorb/Comp 5: Comorb/Comp 6: Laterality: 1 Grade: Dx Conf: SS2000: 2 1 1 4282004 2004 6 0 First Name: Date of Birth: Sex: County (Dx): Date Init Dx: Accn #: AJCC STAGE Clin: T1N1M0 IIA Path: T1N0M0 IA Histology Text: Infiltrating Duct Carcinoma Hist/Behav Code: 85003 Tumor Size: TEXT Physical Exam: Surg Diag/Stag Proc: Papable mass in right breast and suspicous r axillary lymph node on exam. Patient scheduled for biopsy Lab Tests: ERA/PRA positive Pathology: Approx. 1.5 cm mass that is mostly intraductal carcinoma with an area 9mm of invasive infiltrating duct carcinoma. Two sentinel nodes and four axillary nodes are negative for carcinoma. Scopes: Op Proc: , intraductal carcinoma, 05/04/2004 reexcision intraductal and a foci of invasive infiltrating duct. Right axillary lymph node dissection 9 TREATMENT 2 Date Surg Diag/Stag: 5012004 Date 1st Crs Rx: Surg Prim Site: Surg Marg: Surg Proc Other Site: 5042001 23 0 0 Date 1st Surg Proc: Date Most Defin Surg: Scope Reg LN Surg: Reason No Surg: 5012004 5042001 6 0 Date RT Started: Reg RT Tx Modality: Rad/Surg Seq: 6152004 27 3 Date RT Ended: Reg RT Dose cGy: Reason No RT: 7302004 6500 0 Date Sys Tx Started: Palliative Proc: 8052004 0 Date Oth Ther Started: Staging: Path 9mm invasion, no positive nodes, localized Place of Dx: TREATMENT TEXT A patient’s file or abstract, contains many different sections and fields Surgery: Memorial Hospital X-Rays/Scans: Lumpectomy with node dissection Radiation: post op rads Chemotherapy: 04/28/2004 new spiculated mass Remarks: Hormone/Steroid: Immunotherapy: Transplant/Endocrine: Other Therapy: none recommended Tamoxifen Abstracting Abstracting is converting a patient’s medical information to uniform cancer data Electronic Medical Records Last Name: Place of Birth: Soc Sec #: Span/Hisp Orig: Doe 25 123-45-6789 0 PATIENT INFORMATION Jane Middle Name: 4111946 Age: 2 Race: 21 Primary Payer: First Name: Date of Birth: Sex: County (Dx): Address at Diagnosis: Physicians: Jones Johnson Class of Case: Seq No: Date 1st Contact: Year 1st Seen: Fac Ref From: Fac Ref To: Reg LN Exam: Reg LN Pos: 1 4282004 2004 6 0 Date Init Dx: Accn #: AJCC STAGE Clin: T1N1M0 IIA Path: T1N0M0 IA 4749421 3344221 11152004 1 58 Comorb/Comp 1: Comorb/Comp 2: Comorb/Comp 3: Comorb/Comp 4: Comorb/Comp 5: Comorb/Comp 6: 42790 Laterality: 1 Grade: Dx Conf: SS2000: 2 1 1 Histology Text: Infiltrating Duct Carcinoma Hist/Behav Code: 85003 Tumor Size: TEXT Surg Diag/Stag Proc: Papable mass in right breast and suspicous r axillary lymph node on exam. Patient scheduled for biopsy Lab Tests: ERA/PRA positive Approx. 1.5 cm mass that is mostly intraductal carcinoma with an area 9mm of invasive infiltrating duct carcinoma. Two sentinel nodes and four axillary nodes are negative for carcinoma. Scopes: Op Proc: Facility ID#: Med Rec #: Date Last Contact: Cancer Status: Jones Smith King Other: ___________________ CANCER INFORMATION & DIAGNOSIS 5012004 Primary Site Text: R Breast UOQ Prim Site Code: C50.4 Physical Exam: Pathology: Sue 58 1 10 , intraductal carcinoma, 05/04/2004 reexcision intraductal and a foci of invasive infiltrating duct. Right axillary lymph node dissection 9 TREATMENT 2 Date Surg Diag/Stag: 5012004 Date 1st Crs Rx: Surg Prim Site: Surg Marg: Surg Proc Other Site: 5042001 23 0 0 Date 1st Surg Proc: Date Most Defin Surg: Scope Reg LN Surg: Reason No Surg: 5012004 5042001 6 0 Date RT Started: Reg RT Tx Modality: Rad/Surg Seq: 6152004 27 3 Date RT Ended: Reg RT Dose cGy: Reason No RT: 7302004 6500 0 Date Sys Tx Started: Palliative Proc: 8052004 0 Date Oth Ther Started: Staging: Path 9mm invasion, no positive nodes, localized Place of Dx: TREATMENT TEXT Surgery: Memorial Hospital X-Rays/Scans: Lumpectomy with node dissection Radiation: post op rads Chemotherapy: 04/28/2004 new spiculated mass Remarks: Hormone/Steroid: Immunotherapy: Transplant/Endocrine: Other Therapy: none recommended Tamoxifen Cancer Registries have embraced technology Cancer Registries exist within a national framework of health monitoring and data collection The Flow of Cancer Information: A Case Study Diagnosis to treatment Jane Smith learns from her internist that she likely has breast cancer Diagnosis to treatment Further tests are completed at the hospital Diagnosis to treatment Jane’s doctor proposes a course of treatment Diagnosis to treatment Follow-up tests show Jane to be cancer free Diagnosis to treatment 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 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 Female Time since diagnosis Number Percent Cummulative Percent Number Percent 0 to <5 years 2,608,320 40% 40% 2,339,950 32% 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% 100% 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. Cummulative Percent 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 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 New York Cancer registry data are now used to educate New Yorkers about cancer risk factors 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) Privacy concerns are paramount to Cancer Registrars 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 The Cancer Registrar is a key member of health care team Education for Health Information Management Professionals and Cancer Registrars are similar Hospital-based Registrar’s Role Goes Beyond Data Collection Cancer Program Management Cancer Committee Member Monitor quality of Cancer Program Management Provide benchmarks for quality comparison Hospital-based Registrar’s Role Goes Beyond Data Collection Data Analysis for Studies Compiling Cancer Program Annual Report Assess referral patterns Hospital-based Registrar’s Role Goes Beyond Data Collection Participate in cancer prevention Present information to cancer committee, physicians, administration Registrars in Central Cancer Registries are Key Players in Insuring Quality Health Care Edit the data from all facilities Query the database for data quality reports Merge duplicate records Audit healthcare facilities to insure accurate, timely, complete data Registrars in Central Cancer Registries are Key Players in Ensuring Quality Health Care Work with researchers Contribute to data analysis for cancer program planning Present data to the local community, schools, and others Provide education and training for registrars How Does One Become a Cancer Registrar? Formal Education Programs Produce Excellent Cancer Registrars CTRs have pursued higher education 0 PhD or Masters Some college, associates, bachelors Cancer Registrars: A challenging career requires quality education, and certification Certification of Cancer Registrars Certification ensures quality results Additional benefits: certification Establishing a standard of knowledge and competence Measuring the requisite knowledge, skills and abilities of CTR® applicants Promoting professional growth and individual study Formally recognizing CTRs who meet recertification requirements NCRA’s Certification Examination In 1983, the National Tumor Registrars Association (now NCRA) administered the first certification examination for tumor registry professionals. NCRA: Resources for Registrars NCRA represents Cancer Registry professionals and CTRs NCRA Mission Statement Serve as the premier education, credentialing and advocacy resource for cancer data professionals. NCRA offers: Multiple educational and networking opportunities Annual national conference to build knowledge and expertise Promotion of professional standards and ethics NCRA offers: Management of the CTR process and NCRA’s Council on Certification Publication of a peerreviewed scientific journal and a quarterly newsletter NCRA offers: A Web site offering a wide range of publications and information about educational opportunities http://www.ncra-usa.org* Cancer Registry is a Dynamic Profession Cancer Registry is a dynamic profession Registrars are dedicated, enthusiastic, and self motivated professionals Registrars work closely with physicians and administrators Cancer Registry is a dynamic profession Registry data make a difference in patient care and cancer research Registrars perform a wide variety of interesting tasks, including data analysis Cancer Registry is a dynamic profession The profession offers regular work day hours with holidays and vacations There is minimal supervision required for self motivated registrars Cancer Registry careers are rewarding Masters Degree $55,000 $39,000 Associates Degree Cancer Registrars Have Many Career Opportunities 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