A Weapon in the War on Cancer

"Because someone gathered cancer data and looked at survival [rates] over time, my daughters have their lives," declares Louanne Currence. This fact gives the cancer registrar a personal connection to her work.

A registered health information technologist and a certified tumor registrar (CTR), Currence collects and analyzes data on cancer patients. She works at North Kansas City Hospital, in Kansas City, Missouri.

Currence's husband, Daryl M. Currence, died in his 30s from a genetic form of thyroid cancer. When he was diagnosed, as an adolescent in the 1960s, little was known about Multiple Endocrine Neoplasia type IIB (MEN IIB). By the time their two daughters were born in the early 1980s, understanding had progressed, in part due to cancer registries.

Genetic testing revealed that both girls had prophylactic thyroidectomies, and the microscopic carcinoma that was found was successfully removed.

Colleagues value the contributions of cancer registrars. "A network of cancer registries can be our most potent new weapon against the disease," says John Healey, a physician at Memorial Sloan-Kettering Cancer Center in New York City.

"Today thousands of people are living as a result of the type of information we collect and analyze," says Carol Hahn Johnson, CTR, a leader in the field and immediate past president of the National Cancer Registrars Association. "It gives you a sense of pride."

The Scope

Cancer registrars are responsible for helping healthcare professionals see carcinoma's broader picture. By state mandate, all institutions that diagnose and treat cancer must report newly diagnosed cases to a statewide registry. After checking the data for accuracy, state registrars report it to either the Centers for Disease Control's National Program of Cancer Registries or the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Program.

Registrars identify reportable cancer cases by reviewing reports from their own or other medical facilities and by gathering information on outcomes from doctors and, sometimes, patients. The registrars then analyze the data and record it in a concise standardized format.

The data lets researchers and epidemiologists monitor cancer incidence and treatment success. It assists in the development of new and more effective cancer therapies as well as new prevention and control measures.

The Results

Ask cancer registrars about the impact of their work, and they proudly cite the vast improvement in breast cancer treatment in recent years. This has happened largely because registrars have systematically collected outcomes data that showed that early diagnosis and chemotherapy were effective in prolonging life. The data also indicated that less disfiguring treatments, such as lumpectomies, were a reliable option.

Data from the state registry helped focus cancer education programs in Kentucky. A decade ago, more than one-third of Kentucky women developed late-stage breast cancer. The state registry helped epidemiologists identify areas with the highest incidence of the late-stage disease. More effective outreach programs were developed to provide mammograms and early treatment for those at risk. By 1996, late-stage disease incidence in Kentucky had decreased by 5%.

The Background

Cancer registrars often come from the ranks of health information specialists, such as medical transcriptionists. Nurses, especially those who want regular hours, also enter the field. "It's a wonderful profession for the nurse who no longer desires to do direct patient care or the transcriptionist with repetitive strain injury," says April Fritz. She is data quality manager of the National Cancer Institute's SEER program and coordinator of its cancer registry training program.

Before becoming a cancer registrar, Currence worked in a variety of health information management positions. She had been a chart analyst and transcriptionist in the Trinity Lutheran Hospital in Kansas City, Missouri and had worked in its medical staff office.

After completing a two-week program in August 1990 at the University of California, San Francisco, Currence returned to Trinity Lutheran as a cancer registrar.

Like many registrars, Currence is the sole registrar at her institution. But she is not isolated. Currence interacts with registrars at other facilities and with a variety of other healthcare professionals, an aspect of her work she particularly enjoys. "A lot of it is me getting up out of my chair and going to another department," she says. At North Kansas, she works with many departments such as radiology, pathology, coding, quality assurance, administration, and data processing. She serves on the hospital's cancer committee and attends their weekly conferences.

Sometimes, her work takes her off site. Currence travels to doctors' offices to gather information on patients she is tracking. She visits high schools to explain her profession. And, in an effort to attract more healthcare professionals to her understaffed field, she is putting together a teaching module for local training programs.

"As a cancer registrar, I have found the variety, mental stimulation, educational challenges, and friendships that will keep me interested for a long time to come," Currence says. "Registrars may joke about retiring before the next big change in data collection becomes mandatory, but the truth is, we love what we do."

Interested in becoming a cancer registrar? Here's what you need to know in the United States Requirements: Much of a cancer registrar's knowledge comes from on-the-job training and continuing education. Entry-level positions require a basic knowledge of cancer, anatomy, physiology and medical terminology. "Registrars need to be detail oriented and able to work on their own," says April Fritz, data quality manager of the National Cancer Institute's SEER program and coordinator of its cancer registry training program. Education and Training: Because most registrars come from the health information management field, they will have completed an Associate or Bachelor's degree program in the field. Degrees in nursing also qualify people to begin work in the field. The National Cancer Institute and the American College of Surgeons, as well as colleges and universities, offer training programs for entry-level registrars. The National Cancer Registrars Association (NCRA) and state registrar associations provide continuing education and training through seminars and conferences. Salary Level: According to the NCRA, salaries range from US$19,000 for a follow-up secretary to US$55,000 for a director in institutional settings, plus benefits. Independent contractors and those in for-profit companies may earn much more. Locations: Cancer registries are usually housed in the health information management department of institutions but exist as separate entities. Registrars work in medical institutions, for state health departments, for federal agencies such as the National Cancer Institute, and for software and other medical information management companies. Some cancer registrars are consultants. Certification: Certification as a Cancer Tumor Registrar (CTR) is available from the National Board for Certification of Registrars. Professional Organizations: Professional organizations are key for any emerging profession, says Carol Johnson, immediate past president of the NCRA, and technical information specialist at the SEER program. "We are relatively young [only 27 years old] and still evolving." Outlook: Cancer registrars (as part of health information management) are one of the top 20 fastest growing fields, according to the United States Bureau of Labor Statistics. Because of the increasing amount of cancer data, Johnson says, "There is a crying need for registrars."

Here's what you need to know in Canada Canadian Association Considering Tumour Coding Specialty: Currently, in Canada, people are not certified as cancer tumor registrars. However, the board of directors of the Canadian Health Information Management Association (CHIMA) is looking into developing a category for cancer registry. While tumor coding is done in Canada, no training is offered in for the specialty. As a result, Canadians in this field must be certified CHIMA members who have taken US-based training. CHRA offers two designations. Health record technician graduates who pass the national certification examination become certified as Associates with the designation CCHRA(A). Health record administrator and practitioner graduates become certificants with the designation CCHRA(C). People with either designation who want to specialize in tumor registry then complete additional training. Canadian health record practitioners regularly study via correspondence courses from the American Health Information Management Association. Because tumor registry coding is quite complex, few employers attempt on-the-job training. Health record programs in Canada can be found by looking at CHIMA's Certification page.

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