Reporting Anatomic pathology to registries or public health repositories

Current version of the IHE-PAT-ARPH_Supplement_draft

1. Proposed Work Item: Workflow for Reporting Anatomic pathology to Cancer Registry

• Editors: Wendy Scharber, Christel Daniel

Note: This does not include the structured reporting concept.

2. The Problem

Cancer Registries are data systems that collect data on the occurrence of cancer; the type, extent, and location of the cancer; and the type of initial treatment. In each registry, medical facilities (including hospitals, physicians' offices, therapeutic radiation facilities, freestanding surgical centers, and anatomic pathology laboratories) report these data to the state central cancer registry. The cancer information gathered is critical for Public Health to have the ability to report Cancer Statistics. Cancer registry data is used to provide information on cancer trends, survival, treatment standards, access to healthcare and serves as a resource for research.

Historically, Cancer Registries have received paper reports from anatomic pathology laboratories (if received at all) and the registries are required to send Cancer Registrars into laboratories to manually identify reportable cases and abstract pertinent information into an electronic form. This type of case ascertainment and data collection for the cancer registry is very resource intensive, time consuming, and prone to error in transcription and in missed cases. The process could benefit greatly from the implementation of standards reporting pathology information directly to the central cancer registry.

Further information on the benefits, challenges and the cancer registry's uses of electronic pathology reporting can be found in the:

[1] : North American Association of Central Cancer Registries (NAACCR) Electronic Pathology (E-Path) Reporting Guidelines, Dec 2006.

3. Key Use Case

A woman notices a black jagged mole on her right arm. She makes and keeps an appointment with the clinic dermatologist. The dermatologist performs a biopsy and sends the tissue sample to the anatomic pathology laboratory for review and diagnosis.

The anatomic pathology laboratory receives the specimen. The pathologist analyzes the specimen and makes the diagnosis of: malignant melanoma.

Currently: The pathology staff sends a copy of the completed pathology report to the dermatologist and it is subsequently filed in the patient’s clinic medical record. End of Current Use case resulting in an unreported cancer diagnosis.

IHE World: The anatomic pathology laboratory information system identifies a notifiable event and transmits the data to the central cancer registry using IHE standards. The patient does not already exist in the Central Cancer Registry database, so the registry creates a record of the patient’s cancer and automatically populates appropriate data items in the cancer registry record. The registrar validates the populated data and the information is available for analysis and research.

4. Standards & Systems

Technical Framework

[2] The North American Association of Central Cancer Registries (NAACCR) Standards for Cancer Registries Volume V: Pathology Electronic Reporting; Version 2.1

• HL7 Version 2.5.1

• Logical Observation Identifiers Names and Codes (LOINC)

• Systematized Nomenclature of Medicine, Clinical Terms (SNOMED CT)

• NAACCR Search Term List

• Recommended Site Elisa test kit

• International Classification of Diseases for Oncology, 3rd Edition (ICD-0-3)

Message Conformance

Message can be validated using:

[3] : NAACCR Volume V Messaging Workbench Profile.

5. Discussion

The World Health Organization reports that cancer is a leading cause of death worldwide. The disease accounted for 7.9 million deaths (or around 13% of all deaths worldwide) in 2007. Many countries support cancer reporting and cancer surveillance activities to national cancer programs which serve as the foundation for a comprehensive strategy to reduce illness and death from cancer.

Population-based cancer registries provides information that can be used: By physicians to tell a patient that is just diagnosed with cancer what his/her prognosis is What kind of treatment has the best chance for a cure in his/her situation By public health planners to effectively allocate resources for cancer screening, prevention and control To produce statistics like: 1 in x women will be diagnosed with a breast cancer

In developed countries, between 70 and 95 percent of cancers have one or more pathology reports describing the disease; in the United States, it is approximately 95%. Because anatomic pathology laboratories are a primary source of cancer information, electronic reporting is a timely, accurate, and cost-effective means of obtaining the information.