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Texas Cancer Registry and Cancer Reporting

Texas Cancer Registry and Cancer Reporting. Overview. Objectives. By the end of this training, you should be able to discuss: Cancer reporting & the law Purpose and goals of Texas Cancer Registry (TCR) Reporting compliance Confidentiality and HIPAA Standard Setters

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Texas Cancer Registry and Cancer Reporting

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  1. Texas Cancer Registry and Cancer Reporting Overview

  2. Objectives By the end of this training, you should be able to discuss: • Cancer reporting & the law • Purpose and goals of Texas Cancer Registry (TCR) • Reporting compliance • Confidentiality and HIPAA • Standard Setters • Cancer Reporting Handbook TCR and Cancer Reporting Overview

  3. Cancer Reporting Handbook • Introduction • Standards • Casefinding • Demographics • Cancer Information • Staging  • Treatment Information • Text Documentation • Appendices TCR and Cancer Reporting Overview

  4. National Cancer Act The National Cancer Act of 1971 created a national cancer program and expanded the National Cancer Institute (NCI). It also provided a mandate to collect, analyze and disseminate data to aid in the prevention, diagnosis and treatment of cancer in the U.S. TCR and Cancer Reporting Overview

  5. Texas Cancer Control Act (1979) This state legislation established the Cancer Registry Program within the Texas Department of Health (now the Texas Department of State Health Services), making cancer a reportable disease. The purpose of the program was to: • provide an accurate and continuing source of data concerning cancer and certain specified precancerous and tumorous diseases • compile statistics to help in the early recognition, prevention, cure, or control of cancer TCR and Cancer Reporting Overview

  6. Texas Cancer Registry Vision: A cancer-free Texas. Mission: To collect, maintain, and disseminate high quality cancer data that contribute towards cancer prevention and control; research; and improving diagnoses, treatment, survival, and quality of life for all cancer patients Philosophy: The TCR strives to: • Maintain a high quality nationally certified statewide population-based cancer registry with complete, timely, and accurate data • Meet the data needs of Texans, including public health officials, healthcare practitioners, cancer researchers, health planners, advocacy groups, the public, and other local, state, and national entities • Make a significant contribution to the fight against cancer TCR and Cancer Reporting Overview

  7. Estimated Cancer Incidence & Mortality • In 2019, there are an estimated 1,762,450 new cancer cases diagnosed and 606,640 cancer deaths in the United States.1 • In Texas, there were an estimated 124,383 new cancer cases diagnosed and 45,524 cancer deaths in Texas this year.2 American Cancer Society 1Cancer Facts & Figures 2019. American Cancer Society. 22019 Texas Expected Cases and Deaths. Texas Cancer Registry. TCR and Cancer Reporting Overview

  8. TCR Statistics • 4th largest US cancer registry • 600 reporting facilities • 98% of facilities report electronic • 242,000 records received each year • 119,000 unique cases each year • 400 data requests received each year TCR and Cancer Reporting Overview

  9. TCR Funding Sources • Federal Grant funding • Centers for Disease Control and Prevention (CDC) • State agency funding • Texas Department of State Health Services • Texas Health and Human Services Commission • Cancer Prevention and Research Institute of Texas TCR and Cancer Reporting Overview

  10. CHI Organization HHS Executive Commissioner — Cecile Young Commissioner Public Health (DSHS) — John Hellerstedt, MD TCR and Cancer Reporting Overview

  11. TCR Organization Environmental Epidemiology & Disease Registries TCR and Cancer Reporting Overview

  12. Staffing • Branch Manager • Budget Analyst • Graphic Design & Web management • Data handler (Web Plus extraction, run through GenEdits to check for # cases, errors, SAS, upload to TCR database) • Programmers • Statisticians • QA for consolidation and data quality improvement, edits • Death clearance • Regional Managers, Team Leads, Staff (11 HSRs in Texas) • Statewide data acquisition • Statewide compliance monitoring • Trainers • Epidemiologists & Research Specialists (scientists and biostatisticians) TCR and Cancer Reporting Overview

  13. Ethics • All Staff sign a confidentiality agreement after one on one or small group counseling on privacy, security, the law including HIPAA, and ethics • All research requests are thoroughly vetted TCR and Cancer Reporting Overview

  14. TCR Website https://dshs.texas.gov/tcr TCR and Cancer Reporting Overview

  15. Web Plus The TCR Registry uses the web-based application Web Plus to receive and share cancer case records. The benefits of using Web Plus include: • No software to install • Secure sharing • Online abstracting • File sharing • Editing in app TCR and Cancer Reporting Overview

  16. Using Web Plus TCR and Cancer Reporting Overview

  17. Texas Cancer Incidence Reporting Act Under chapter 82 of the Health & Safety Code (amended 9/2001), the following health care facilities must report cancer cases to the Texas Cancer Registry: • Hospitals • Clinical Laboratories • Cancer Treatment Centers • Health Care Practitioners • Ambulatory Surgical Centers TCR and Cancer Reporting Overview

  18. Compliance All cancer cases must be submitted within6 months of: • Initial diagnosis date, or • First admission with active disease, or • Admission for the treatment of cancer Cancer reporting rules requires monthly submissions from health care facilities with an annual caseload of greater than 400 and quarterly submissions for health care facilities with an annual caseload of 400 or fewer. However, weekly submissions from all facilities is recommended. TCR and Cancer Reporting Overview

  19. Timely Reporting Calendar for 2018 Cases TCR and Cancer Reporting Overview

  20. Timely Reporting Calendar for 2019 Cases TCR and Cancer Reporting Overview

  21. HIPAA and Confidentiality • Data collected from reporting facilities under the Texas Cancer Incidence Reporting Act are confidential • Individual patient identity is not disclosed to the public • No individual or facility reporting will be held criminally liable for reporting to the TCR as required by law TCR and Cancer Reporting Overview

  22. HIPAA Compliance • HIPAA allows for reporting of cancer data to central cancer registries • Facilities should report only the cases and data items required by the TCR • For more information, visit the “Cancer Reporting Law and Rules” on the TCR website https://dshs.texas.gov/tcr/lawrules.shtm Texas Cancer Registry | Standards

  23. Disclosure of Data • Access to cancer related data is available only in accordance with data release policies & procedures • Data is released in aggregate form • May exchange patient-specific data with reporting facility • Reports and analytic tools are available through the “Statistics and Research Data” section of the TCR website http://dshs.texas.gov/tcr/data.shtm Texas Cancer Registry | Standards

  24. Web Query Tool Users can create customized maps and tables of Texas cancer incidence or mortality rates TCR and Cancer Reporting Overview

  25. Annual Calls for Data • NAACCR • Preliminary submission at the beginning of the year • Final submission at the end of the year • NPCR – submission once a year • Data for 2016 was submitted at the end of 2018. The two-year gap allows the TCR to: • Carefully process and clean data • Check for duplicate cases and coding errors TCR and Cancer Reporting Overview

  26. Internal Quality Assurance • All submissions are run through a data quality check looking for errors, including: • Duplicate records • Unacceptable codes for any fields • Inter-field inconsistencies and invalid information (site/sex, site/morphology combinations, etc.) • TCR edits are specific to the Texas Cancer Registry and to National Program of Cancer Registries (NPCR) requirements • Facilities must run the submission file through the appropriate NAACCR and TCR edits before submission Texas Cancer Registry | Standards

  27. External Quality Assurance • TCR staff re-abstract a sample of reported cases. This helps us assess the quality of a facility’s cancer case reporting and identify training needs. • The TCR provides continuing education and training sessions to cancer registrars and medical records personnel. • TCR has a new Inpatient/Outpatient Casefinding Follow-back Audit process which started with 2014 admission year. • The TCR database links with the Texas Hospital Inpatient and Outpatient Data from the Texas Health Care Information Council (THCIC) to help identify missed cases Texas Cancer Registry | Standards

  28. Death Clearance • Death clearance assesses reporting completeness • The process matches the TCR database against the Vital Statistics Unit death file • If a match is found, date of death and cause of death are consolidated with existing cancer record in the TCR database Texas Cancer Registry | Standards

  29. Follow Back Inpatient/Outpatient Casefinding & Death Clearance • Performed bi-annually • Eliminate multiple listing requests for facilities • Small Casefinding and Data Collection (CFDC) facilities are not required to abstract and submit missed cases Texas Cancer Registry | Standards

  30. Master Context Diagram TCR and Cancer Reporting Overview

  31. Standard Setters • Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) • NCI Surveillance Epidemiology and End Results (SEER) • North American Association of Central Cancer Registries (NAACCR) • Commission on Cancer (CoC) National Cancer Database (NCDB) • National Cancer Registrars Association TCR and Cancer Reporting Overview

  32. Reporting Changes • Each year, the standard setters issue changes to reporting. TCR adheres to the requirements set by the National Program of Cancer Registries (NPCR). • The TCR Cancer Registry Handbook is issued based on changes received from standard setters. • Some data fields may be changed, added or deleted in Web Plus or your registry software. • NAACCR Version 18 should be used unless otherwise instructed by TCR staff. TCR and Cancer Reporting Overview

  33. Reporting Tools • 2018-2019 Cancer Reporting Handbook https://www.dshs.texas.gov/tcr/training/2018-2019-handbook.aspx • SEER Program Coding and Staging Manual 2018 https://seer.cancer.gov/manuals/2018/SPCSM_2018_maindoc.pdf • Standards for Oncology Registry Entry (STORE) https://www.facs.org/~/media/files/quality%20programs/cancer/ncdb/store_manual_2018.ashx • Formerly FORDS manual TCR and Cancer Reporting Overview

  34. Reporting Tools • ICD-O-3 Book • (The online version is updated and should only be used for cases diagnosed in 2018.) http://codes.iarc.fr • 2018 Solid Tumor Rules https://seer.cancer.gov/tools/solidtumor/STM_2018.pdf • Hematopoietic & Lymphoid Database https://seer.cancer.gov/seertools/hemelymph/ • Hematopoietic & Lymphoid Manual https://seer.cancer.gov/tools/heme/Hematopoietic_Instructions_and_Rules.pdf TCR and Cancer Reporting Overview

  35. Reporting Tools • Summary Stage 2018 Manual https://seer.cancer.gov/tools/ssm/2018-Summary-Stage-Manual.pdf • AJCC Cancer Staging Manual 8th Edition (3rd printing) https://cancerstaging.org/CSE/Registrar/Pages/Eight-Edition-Webinars.aspx TCR and Cancer Reporting Overview

  36. Reporting Tools • Site Specific Data Items (SSDI) Manual https://www.naaccr.org/SSDI/SSDI-Manual.pdf?v=1559140539 • Grade Manual https://www.naaccr.org/SSDI/Grade-Manual.pdf?v=1559140539 • SEER*Rx Database https://seer.cancer.gov/tools/seerrx/ TCR and Cancer Reporting Overview

  37. TCR Handbook Sources • SEER Program Coding and Staging Manual • STORE Manual • NAACCR Standards for Cancer Registries, Volume II • ICD-O-3 • 2018 Solid Tumor Rules • Hematopoietic and Lymphoid Neoplasm Manual and Database TCR and Cancer Reporting Overview

  38. Manual Breakdown TCR and Cancer Reporting Overview

  39. TCR Coding and Staging Manuals (by dx. Date) TCR and Cancer Reporting Overview

  40. TCR Training Resources The TCR training website includes links to training resources, including NAACCR updates, AJCC trainings and websites frequently used by cancer reporters. http://www.dshs.texas.gov/tcr/training_resources.shtm TCR and Cancer Reporting Overview

  41. Summary You should now be able to discuss: • Cancer reporting & the law • Purpose and goals of Texas Cancer Registry (TCR) • Reporting compliance • Confidentiality and HIPAA • Standard Setters • Cancer Reporting Handbook TCR and Cancer Reporting Overview

  42. Thank you

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