Cancer Registries and Big Data

Cancer Registries and Registrars

• Cancer registrars are healthcare professionals who collect detailed data on cancer diagnosis, treatment, and survivorship.
• The data collected is essential for healthcare providers and public health officials to monitor and improve cancer treatment, conduct research, and target cancer prevention and screening programs.
• Cancer registry data is an early example of "big data," referring to large datasets analyzed computationally to reveal patterns and trends.
• High-quality data collection from individual cases is paramount.
• Registries accumulate information on many individuals with a specific health condition or procedure.
• Health registries traditionally abstract data from individual medical records created by medical practitioners.
• Electronic health records enable data items to be electronically added to registry databases.
• EHRs share information across providers and include data from all clinicians involved in patient care.
• A cancer registry is an information system designed for the collection, management, and analysis of data on persons with cancer and certain other neoplastic diseases.
• Cancer registries have evolved from paper-based data collection to electronic methodologies, promoting data standardization.

History of Cancer Registries

• Cancer was first recorded as a cause of death in 1629 in England.
• A systematic collection of information on cancer began in London in 1728.
• Death registration was implemented in the United States in 1839.
• An Italian physician surveyed the entire population of his hometown in 1842 and reported differences in cancer rates between nuns and married women.
• In 1915, Frederick L. Hoffman from Prudential published cancer statistics from around the world.
• The oldest modern cancer registry began in Hamburg, Germany, in 1926.
• The first site-specific cancer registry in the US was a bone sarcoma registry established in 1926.
• Population-based cancer registration in the US began in Connecticut in 1935.
• The National Cancer Act of 1937 established the National Cancer Institute (NCI).
• The Danish cancer registry was founded in 1942 and is the oldest functioning registry covering a national population.
• Tasks of the registry include collecting data on patient follow-up, morbidity statistics, and variations in the incidence of malignant neoplasms.

Types of Cancer Registries in the US

• Hospital Registries: maintain data on patients diagnosed or treated for cancer at their facility, focusing on improving patient care and research.
• Population-Based Registries: record all cancer cases in a defined geographic area for epidemiology and public health purposes.
• Special Registries: collect and maintain data on specific cancers, such as a registry focused on a type of bone cancer.
• Central Cancer Registries: population-based registries at the regional or state level that maintain data on all cancer patients in their area.
• All 50 states have laws requiring cancer cases to be reported to a central cancer registry.
• Facilities diagnosing or treating cancer patients must report cancer cases and data to their central registry.
• Registries receive funding from and report data to either CDC's NPCR, NCI's SEER, or both.
• Accreditation from the COC helps hospitals ensure high-quality cancer care and treatment.
• Registrars in accredited hospitals report data to the National Cancer Database (NCDB) in accordance with COC requirements.

Role of the Cancer Registrar

• Cancer registrars are the first link in the cancer registry system.
• They collect detailed information from medical records of cancer cases diagnosed or treated in their facilities.
• Cancer registrars can work for cancer centers, physician offices, or staffing agencies also.
• 75% of the NCRA members work in hospital-based facilities.
• Responsibilities include identifying cancer cases, case finding, coding, and abstracting cases.
• Abstracted information includes demographics, history, diagnostic procedures, lab results, primary cancer site, stage, treatment, and more.
• Registrars collect data on patients throughout their lives, known as follow-up.
• Registrars must adhere to federal laws and facility guidelines to ensure patient privacy and confidentiality.
• Most facilities and central Registries require cancer registrars to hold the ODS credential.
• Data completeness and accuracy are crucial aspects of a registrar's work.
• Registrars are responsible for implementing quality control procedures and plans.
• Because of their data understanding, registrars analyze data and give reports and presentations.
• Registrars provide cancer data for cancer meetings, including agenda development, facilitation, documenting minutes, and action items.

Cancer Conferences and Committees

• In the past, physicians would present cancer cases to a tumor board of oncologists.
• The American College of Surgeons (ACOS) recommended a collaborative practice for conferences.
• Current cancer conferences include all members of a cancer team and share information to offer the most cancer care.
• Cancer committees includes physicians, non-physician members, administrative, clinical, and support staff, a COC liaison physician, and a cancer program admin.
• In 1956, the American College of Surgeons, ACOS Commission on cancer, COC, adopted a policy to encourage the development of hospital-based cancer registries.
• There are many national medical registries, tracking data for HIV, birth defects etc.
• Registry data are used to help support investigations into causes and to identify needed support services

Standard Setters

• Uniform data collection methods and codes are to compare differences in cancer incidence.
• American College of Surgeons (ACOS) and Centers for Disease Control and Prevention (CDC) are instrumental in setting data and transmission standards.
• The North American Association of Central Cancer Registries (NAACCR) promotes data standards.
• Other organizations, such as ACS, AJCC, CAP, and WHO, contributed to developing codes describing disease characteristics for the registry dataset.
• The final decision for inclusion of data lies with standard setters.

American College of Surgeons (ACOS):

• The Cancer Programs Department of American College of Surgeons, ACOS, is made of seven programs.
• Three accreditation programs consist of the Commission on Cancer (COC), National Accreditation Program for Breast Centers (NAPBC), & NAPRC
• Four additional Programs are the National Cancer Database (NCDB), American Joint Committee on Cancer (AJCC), Cancer Research Program (CRP) and Cancer Surgery Standards Program (CSSP)
• The 7 programs are a collaborative authority on cancer with an overall mission to improve cancer patient care.
• Since 1913, ACOS focused on improving surgery and physician edication.
• By 1930 the first standard was published and accreditation program that would analyze clinic performances established.
• The name changed to Commission on Cancer, COC, focused clinics with consistent diagnostic and cancer treatments.
• The COC is a consortion focused on improving survivial and quality of cancer care.
• As of 2020 it accredidts over 1500 hospitals including cancer centers and program networks especially in the United States.
• COC membership includes over 100 individuals representing medical professionals involved in cancer care.

National Accreditation Program for Breast Centers (NAPBC)

• NAPBC represents a professional organization used to improve the quality of care of monitor outcomes.
• The NAPBC is a body that also sets standards conducts surveys, accredidts US and international centers.

HLSG and MLTG

• Begun in 2018 both groups HLSL and MLTG the high level strategic group coordinated a change management process for standard setting agencies.
• It is a collaborate work of these agencies or agencies.
• The HLSG make that there are communications between all cancer organizations.
• The primary is to analyze cancer surveillance standard evaluate needs and make updates with the changes.

National Accreditation Program for Rectal Cancer (NAPRC)

• Its goal to make sure that patients that rectal receiv appropriate care with the multidiscplinary structure.
• Program structure is needed to set up qualified physicicans and coordinators.
• NAPRC sets successful models that emphasize patient care and research support.

National Cancer Database (NCDB)

• Jointly is sponsored by the ACOS and ACS, NCDB databased hospital registry in cancer programs.

American Joint Committee on Cancer

• The American Joint Committee on Cancer, AJCC, gives worldwide leadership in the maintenance of evidence systems.
• The AJCC every six to eight years has been publishing manuals of staging cancer and more with annual updates.

Cancer Research Program (CRP)

• The mission is to knowledge of awareness of practice standards, oncology and surgical care.

PCorl

• The patient centererd comes from U.S. based nonprofit through the act ACA. Pcori Helps those people that make form decisions or delivery with outcom.

Cancer Surgery Standards Program (CSSP)

• This will provide guidance on collection of essential that will be help cancer surgery.
• The 2020 COC stans for accreditation and optmal resources also include opertative stands which require data selec to track facilities.

Centers for Disease Control and Prevention, National Cancer Registries (NPCR)

• National Prigram for Cantor Registries, NPCR addresses cancer prevention and control.
• The NPCR helps with surveillance, burden nationwide, Health departner, develop prevention, and to provide effective date for cancer controll.
• This program also give help on the community and level action for local level incentive community inventment.
• With the help of CDC and other organizations to collect data which is 97% of the population.
• The National Centers, NPCR must follow laws regarding the establishment and endorsement.
• There exist to include benign and borderline tumors beginning with cases starting January 1st 2004.
• NPCR helps with tandem in CDC and the health departments for channels.

Primary Activites and Programs for NPCR

Operation and adminstration is done by factors in CDC or other registraries.

• Must use the rules of the program, project director, and pricipal investagator.
• Data management includes the Registraires to collect those 2 except for basal to the diagnosis.
• The Registaires do include cancer site, diagnosis, the treatment information.
• NPCR has to collect the data to make ensure programs and benifits from prevention which is why all records are collected for public.

Data Quality Assuarance Education and Training

• A dedicated ODS certified cancer registar is support with CDC for control training.
• Training sessions include workshops to reporters with education which included training the basic reports/
• It also depends on the registrar's staff due to the program education level.

CDC and NPCR

• CDC tries to have sufficent NPCR tools for next steps while 3 CDC cancer teams work on the NPCR..
• The Registrates complete a web series instrument where the information is strategic and used in programs useful.
• It helps estimate NPCR meet data standards.

CDC and informatics

• Informatics makes programs and software's for cancer. Tools that fall under software included is: Abstract plus: This is tool for electornically diagnosis of patients. eMaRC Plus: tool that creates that potential cases by finding reports for certain abilities.
• CDC combines incident reports from NPCR for US cancer the data also include data for National Center for health staticics (CNCHS).
• It helps give people the resources that use the tool and latest on new cancer.
• They also help support studies from CDC when data need exam on the care of treatmenet.

NPCR Future Directions

• With the growing technology used in system it is faced with challenges to balances rapidly changing external and stable data.
• Path reports into more through electronic reports in all data managmenet.
• They are working on processing language by building from to share registries to help make timely

SEER Program

• Is an source for cancer incidence and they helped provide support to data. The program goals:
• Collect cancer among geographic location cover with registries and collect data.
• conduct control of the high quality data, also report on the caner burden and cancer incidence rates.
• identify trends of occurance for subgrops with all charactertistics..

SEER, Primary Activites and Programs

SEER focused initiaties which is e-path for software. The SRP has been working to report near time lab reports. DOE is partnered with NCI to impact future results. NLP for pilot focus on specific elements and they are part of more to cancer serveillance.

• All the tools such as algorithims are need to provide the cancer treatment. SEER VTR to Identify those bio practices that uses SEER registries that will be used for tissue and lab work.
• Analyis all will data on these large community areas.

CISNET

• The consoritium uses the impacts of models and treatments.
• The help with the projects to do with caner controls. they desinged special rates to help SEER.
• RRSS are used focus on medicals records from certain Registries/ Data reported to the Registies the the NaaccR form which includes data set in geaogrpahic areas.

North American Association of Central Cancer Registries (NAACCR)

• Naaccr is an organization where it develops data standard.
• It provies education for trainers for population groups from central Registires
• It works for organizations that promote medical programs to reduce the burden of Cancer.
• Its Board of dicrectors defnes goals and developes strategies through steerong comittees. They are used to executive objectives.
• Also works with groups and task forces to complete and support.

Naaccr Cont

• Standardization works towards changes in cancer surveillance.
• The unifrom standars for work help with changes new code the member to ensure comparable
• This is all used for a variety of high quality. The Comunacation steeting works the communcation of internal and external and shares it to wide audieinces. The steering newsletter is updated to reflect on the website.
• These comittees works for educatoin that helps develop better training needs.

History

• Did not start states collecting cancer till the 70s and 80s but they start adopting seer data that are needed.
• This is used to show how it can maxmize data for boundries, and ACS and other insitiutions had these
• Centers all see opportunity to ultimately improve the data.
• There are still boards consist the past presient and members