Reporting Cancer in Iowa

Since 1982 cancer has been a reportable disease in Iowa and the Registry has been delegated the responsibility for collecting data on cancer. Chapter 641- 1.3 (139A) Reportable Diseases, of the Iowa Administrative Code, states cancer data are provided through review of records from hospitals, radiation treatment centers, outpatient surgical facilities, oncology clinics, pathology laboratories, and physicians’ offices.

Furthermore, since the Registry database is used for research, chapter 135.40 of the Iowa Administrative Code protects persons and hospitals from liability of any kind or character by reason of having provided such information.

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Data Collection

Cancer patient data are collected from hospitals, pathology laboratories, cancer treatment centers, and Iowa death certificates. The State Health Registry (SHRI) also collects data from targeted physicians that send their pathology specimens to out-of-state laboratories. Data are collected by 21 field representatives who are responsible for casefinding in their coverage areas.

Some cancer programs submit their data directly to the SHRI. The SHRI also has data exchange agreements with other states. Data are submitted to the SEER Program annually. Iowa data are also submitted to the North American Association of Central Cancer Registries (NAACCR) for Cancer in North America (CINA). Iowa data are also submitted internationally for Cancer Incidence in 5 Continents, published by the International Association of Cancer Registries(IARC).

Data collected include patient information, demographics, a description of the cancer, extent of disease, information on first course of therapy, follow-up data and other data items that provide assistance in managing and maintaining cancer registry operations. The SHRI follows patients from diagnosis to produce survival figures and to aid in research studies.

Confidentiality

Confidentiality of data is extremely important to the operation and maintenance of the Registry. The following are critical elements of the Registry’s comprehensive confidentiality policies and procedures that relate to research uses, reporting and release of cancer data.

Confidentiality policies, pledges and procedures are required in all phases of Registry operation in order to:

Protect the privacy of the individual cancer patient;

Protect the privacy of the facilities reporting the case;

Protect the privacy of the physician responsible for the care of the cancer patient; and

Provide public assurance that the data will not be abused.

HIPAA and Data Security

In 1996 the U.S. Congress passed a law requiring, among other things, uniform federal privacy protections for individually identifiable health information. This law is called the Health Insurance Portability and Accountability Act of 1996, or “HIPAA”. Copies of the HIPAA Privacy Rule, as well as helpful explanatory materials, may be found at the HHS Office of Civil Rights website.

Under HIPAA, a ‘Public Health Authority’ refers to “an agency or authority of the United States, a State or territory, a political subdivision of a State or territory, or an Indian tribe, or a person or entity acting under a grant of authority from or contract with such public agency, including the employees or agents of such public agency or its contractors or persons or entities to whom it has granted authority, that is responsible for public health matters as part of its official mandate. The Iowa Cancer Registry (ICR) is considered a public health authority because our state law mandates our duties.

The SHRI has developed and implemented formal policies, procedures and best practices that will safeguard the integrity, confidentiality, and availability of its data. This includes the conduct of personnel with regards to patient data as well as the protection of physical computer systems and buildings and equipment from fire, environmental hazards or intrusion. Processes have been put in place to guard against unauthorized access to data that are transmitted over the communications network.