CyberView

To view definitions of data sources for the hospital and central cancer registries, place your mouse cursor over the circles in the diagram below. To view additional information about each data source, click on the circles in the diagram below.

• Hospitals with or without Registries
  Healthcare facilities that provide inpatient and outpatient diagnostic, treatment, and palliative care services. They may serve a community or regional population or serve as a teaching and referral center. A hospital may seek approval for its cancer program from the American College of Surgeons Commission on Cancer, whose program standards require operation of a hospital cancer registry.
• Medical Records
  Paper-based or computerized information recorded during the patient's encounters with the facility. Patient medical records are the primary source of patient identification, diagnosis, and treatment information.
• Disease Index
  A complete, numerically sequenced list of coded diseases and conditions diagnosed in patients within a hospital. Diseases and conditions identified in patient medical records are coded by health information professionals using standard classification systems such as ICD-9-CM or CPT (Current Procedural Terminology). The Disease Index, compiled from these codes, is a casefinding source for the cancer registry.
• Specialty Databases
  Collections of data that describe a hospital's diagnostic and treatment experience with a specific disease. They are tools for improving the quality of care and measuring the effectiveness of healthcare delivery for that disease. An example is the cancer registry database, which contains cancer-related information abstracted from patient medical records and patient follow-up data gathered from outside sources.
• Admissions
  The hospital department that processes patient admissions and generates key patient identification and demographic data, including the patient's name, address, date of birth, race, sex, Social Security number, and insurance carrier.
• Outpatient Services
  Ambulatory services provided to patients in hospital-based clinics and departments where the length of stay is less than 24 hours. Documentation of outpatient services, which includes the patient's medical history, physical examination, diagnostic and therapeutic procedures, consultations, observations, and discharge notes, usually is integrated with the patient's inpatient medical record to form a unified hospital medical record.
• Diagnostic Imaging
  The hospital department that creates images of structural or functional patterns of human organs or tissues for the purpose of identifying, diagnosing, or monitoring disease. Radiographs (X-rays), fluoroscopy, ultrasound, mammography, computerized tomography (CT scans), positron emission tomography (PET scans), magnetic resonance imaging (MRI scans), and nuclear medicine imaging are included. Information reported from diagnostic imaging includes the type of study, body location, description and evaluation of the image, and diagnosis.
• Pathology Laboratory
  A department that examines organs, tissues, cells, and bodily fluids removed from patients for the investigation and diagnosis of disease, and conducts autopsies to study disease processes and to determine cause of death. Pathology reports include the type of material examined, body location from which the specimen was taken, gross and microscopic description and evaluation of tissues, components of bodily fluids, and diagnosis. A pathology laboratory may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to pathology records.
• Treatment Logs
  Daily records of treatment given or procedures performed in a hospital department such as a surgery unit or an outpatient chemotherapy clinic. They generally include patient identifiers, procedures performed, diagnosis, and practitioners, and are a source of casefinding data.
• Radiation Oncology
  The department that provides curative, adjuvant, or palliative cancer treatment using radiation to control malignant cells. Radiation may be given as external beam radiotherapy, brachytherapy or implantation of radioactive sources, or injection or ingestion of radioactive materials. Radiation oncology documentation, which may be maintained separate from the hospital medical record, includes pre-treatment consultation summarizing the cancer diagnosis and treatment to date, treatment planning and daily dose delivery, treatment summary, and patient follow-up visits.
• Oncology Clinics
  Ambulatory care units responsible for staging, medical treatment, and follow-up of cancer patients in a hospital. A clinic may focus on a particular cancer site such as breast cancer, provide a centralized setting for chemotherapy administration, or coordinate all services provided to oncology patients throughout the facility. Medical oncology documentation varies according to the services provided and may be separate from the hospital medical record.
• Pharmacy
  A hospital pharmacy maintains the hospital formulary, stocks and releases drugs for treatment as ordered by physicians, addresses complex clinical medication management issues, and provides information on available drugs, including generic and brand names, disease-specific prescriptions, and drugs administered to individual patients.
• Business Office
  The department responsible for billing and collecting payment from individuals or third-party payors for healthcare services rendered by the facility. It provides information on the financial statement submitted for payment.
• Central Cancer Registries
  Central cancer registries (CCRs) collect, process, and analyze data on all cancer cases diagnosed. Each state in the United States has a CCR.
• Hospitals
  Healthcare facilities that provide inpatient and outpatient diagnostic, treatment, and palliative care services. They may serve a community or regional population or serve as a teaching and referral center. A hospital may seek approval for its cancer program from the American College of Surgeons Commission on Cancer, whose program standards require operation of a hospital cancer registry.
• Freestanding Pathology Laboratories
  Pathology laboratories that operate independently from other healthcare facilities, whose clients may include physician and clinic practices as well as hospitals. They examine organs, tissues, cells, and bodily fluids removed from patients for the investigation and diagnosis of disease, and conduct autopsies to study disease processes and to determine cause of death. Pathology reports include the type of material examined, body location from which the specimen was taken, gross and microscopic description and evaluation of tissues, components of bodily fluids, and diagnosis. Pathology laboratories may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to pathology records.
• Cancer Treatment Facilities
  Healthcare facilities established as separate entities from traditional hospitals, though they may be affiliated with hospitals. They offer a range of diagnostic and treatment services to cancer patients, such as radiation and chemotherapy treatments, including overall management of oncologic care. Cancer centers maintain patient medical records; they may provide cancer information to hospital registries for shared patients or establish their own registry databases for monitoring patient care and outcomes. They may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to its medical records.
• Freestanding Healthcare Practitioners
  Solo or group physician practices, usually focused on a specialty area of medical practice such as internal medicine, general surgery, or urology. Their medical records identify cancer patients and provide cancer-specific treatment data and patient follow-up information. Physician practices may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to their medical records.
• Pharmacies
  Pharmacies stock and release drugs for treatment as ordered by physicians, address complex clinical medication management issues, and provide information on available drugs, including generic and brand names, disease-specific prescriptions, and drugs administered to individual patients.
• Health Insurance Plans
  Medical practice managed by an insurance plan, in which subscribers generally receive primary care at clinics owned by the plan, with referral to outside specialists as needed. A plan maintains consolidated medical records for its patients who receive medical care from multiple facilities and may provide cancer information on shared patients to hospital registries or establish its own registry database for monitoring patient care and outcomes. A plan may be required to report cancer cases to the central registry, to respond to inquiries from the central registry, or to allow central registry access to its medical records.
• Bureau of Vital Statistics
  An agency within a state government that collects, maintains, and distributes information on births and deaths for state residents. It provides demographic and follow-up data for patients in the central registry database, including race, ethnicity, occupation, and date and cause of death.
• Census Tract Database
  A database maintained by the United States Census Bureau containing demographic and economic data by census tract, county, and state divisions. It provides information for generating a measure of socioeconomic status for cancer patients by address at diagnosis.
• State Health Departments
  State government agencies that promote the health of state residents. They usually apply for and manage federal grants to support federally mandated health-related programs such as the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). Central registries are required to link their data with the NBCCEDP database to identify missing cases and improve data quality in both databases.
• IHS/Local Tribe Clinics
  The Indian Health Service (IHS) provides comprehensive health services through IHS and tribally contracted hospitals, health centers, school health centers, and health stations. The health services provided include medical, dental, and environmental health programs. Central registries are required to link data with the IHS database to improve the identification and surveillance of American Indians and Alaska Natives diagnosed with cancer.
• National Death Index
  A central computerized index of death record information aggregated from state vital statistics offices, beginning with 1979 deaths. Established as a resource to aid epidemiologists and other health and medical investigators with mortality ascertainment activities, the index provides information on the date, location, and cause of death.
• Nursing Homes/Hospices
  Long-term care and end-of-life care facilities. Cancer patients may be diagnosed while residing permanently or temporarily in nursing homes. Patients with terminal disease may receive hospice care at home or in a specialty hospital unit, nursing facility, or designated hospice facility. Nursing homes and hospices may be required to respond to inquiries from the central registry, or to allow central registry access to their medical records, particularly for case ascertainment on patients who have died with a cancer diagnosis identified only through death certification information.
• Freestanding Diagnostic Imaging Centers
  Independent healthcare facilities whose clients may include physician and clinic practices as well as hospitals. They create images of body organs and structures for the purposes of diagnosing disease, evaluating disease progression, and monitoring the effects of treatment. Imaging information generally is provided to central cancer registries through reporting procedures established with physician offices and treatment facilities.
• State Cancer Registries
  Population-based registries that identify cancer cases not reported by outside entities, abstract missing cancer information, and consolidate cancer information from multiple sources into a single record. Registry staff monitor the completeness of reporting, maintain relationships with reporting entities, know coding systems and rules, and help reporting entities refine casefinding and abstracting practices.
• Voter Registration
  Rolls of registered voters within a state, maintained by local jurisdictions, containing the voter's name, date of registration, and address at registration. Voter registration provides information for determination and confirmation of address at diagnosis.
• Department of Motor Vehicles
  A state agency that issues driver licenses and maintains traffic offense data. It provides information for the determination or confirmation of date of birth and address at diagnosis.
• Prisons
  Incarcerated patients' medical records may document routine care delivered to a prison population or individual care received at a prison medical center. Cancer diagnostic and treatment information for prisoners generally is available through the hospital that provides non-routine medical services to the prison. Follow-up information may be obtained from the healthcare provider.
• National Cancer Programs
  National cancer programs provide leadership for collecting, disseminating, and interpreting cancer surveillance data and a resource for research to address the cancer burden in the United States.
• SEER
  The Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute is an authoritative source of information on cancer incidence and survival in the United States. SEER collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 26% of the United States population.
• NAACCR
  The North American Association of Central Cancer Registries (NAACCR) is a collaborative umbrella organization for cancer registries, governmental agencies, professional organizations, and private groups in North America that are interested in enhancing the quality and use of cancer registry data.
• CoC
  The American College of Surgeons (ACoS) Commission on Cancer (CoC) is a consortium of professional organizations dedicated to improving survival and quality of life for cancer patients through standard setting, prevention, research, education, and monitoring quality of care. It analyzes hospital registry data. It is a business actor, external to the organization.
• NPCR
  Established by Congress through the Cancer Registries Amendment Act in 1992 and administered by the Centers for Disease Control and Prevention (CDC), the National Program of Cancer Registries (NPCR) collects data on the occurrence of cancer; the type, extent, and location of the cancer; and the type of initial treatment. These data represent 98% of the U.S. population.

NPCR–AERRO includes cancer data sources and the lines drawn to the Central Cancer Registries and the National Cancer Programs/Organizations.
*Numbers rank the data sources on the quality of useful data available on a scale of 1 being the most useful and 10 being the least useful.
**Pathology laboratories send data to both hospital registries and central cancer registries.
***CoC receives data directly from hospitals.

The National Program of Cancer Registries–Advancing E-cancer Reporting and Registry Operations (NPCR–AERRO) is a collaborative effort to develop a model for sending data from clinical electronic health records (EHR) to hospital and state cancer registries. The NPCR–AERRO model will help cancer registration experts develop a model and a plan to enable cancer registries to obtain most cancer data electronically, producing more complete, timely, and accurate cancer surveillance data.

To understand the differences between electronic health records (EHR) and electronic medical records (EMR), please read the white paper Electronic Medical Records vs. Electronic Health Records: Yes, There Is a Difference [PDF-970KB]* by HIMSS Analytics.

The NPCR–AERRO will focus on all current and potential data sources for the hospital and central cancer registry levels. The NPCR–AERRO scope diagram shown above is a simple flow diagram that identifies data sources in a ranked order, based on the quantity of useful data that are available and reported to the central cancer registry. This diagram provides a simplified high-level view of the project scope for the hospital and central cancer registry levels.