The faces behind cancer statistics
Pulse editor
Sunday, November 16, 2008
Ever wonder how the Centers for Disease Control and Prevention and the American Cancer Society get their cancer statistics? They come from cancer tumor registrars, who work behind the scenes in hospitals.
They are trained to collect and report timely, accurate and complete data to state and national cancer registries.
Photos by BARRY WILLIAMS / Special
Dolores McCord, manager of oncology analytics at Piedmont Hospital and a certified tumor registrar, takes notes as a doctor makes a presentation during a meeting to discuss a cancer patient’s care.
Dr. Vasily Assikis (left) presents a patient’s case during a meeting of the oncology team at Piedmont Hospital in Atlanta.
“Their work is little-known, but critical,” said Kevin C. Ward, CTR, president of the Georgia Tumor Registrars Association. “Cancer registrars bridge the gap between cancer patients and the many researchers and health professionals who need access to quality cancer data in order to make public health decisions related to cancer research, diagnosis and treatment.”
People come to the job from various backgrounds. Debra Fortier, RHIA, CTR, oncology data center coordinator for Gwinnett Medical Center in Lawrenceville, has experience in hospital quality assurance and with medical records.
“I had been a supervisor, manager and then director for a hospital medical records department and needed a change eight years ago,” Fortier said. “I knew of the registry early on in my career and took the job at Gwinnett Medical.”
Fortier and her team review pathology reports, looking for key words that might pertain to cancer. The data is downloaded into a database.
Cancer cases are assigned to a suspense file, where registrars begin collecting data about diagnosis, staging and prescribed treatment. After the tumor has been staged, a registrar will write an abstract to add the case to the cancer registry.
“We use a collaborative stage system that picks up every aspect of a tumor, including its markers, size, lymph node involvement, estrogen-negative or positive receptors, how far it [has] spread and margins,” Fortier said.
The registrars continue to collect information on patients through treatment and followup care for the rest of their lives. Even after death, patients stay on state and national registries.
Valuable information
After staging, registrars write an abstract with all the coded data and question-and-answer notes that include as much demographic and patient history information as possible. Things like a patient’s age, race, family history of cancer, smoking history, treatment outcome and complications are the kind of information researchers and others use to study the disease.
“Seeing clusters of people with the same kind of cancer in one area can help identify and solve problems,” Fortier said.
Gwinnett County, which started its registry in 1989, has almost 20,000 cases in its databank, and the numbers are growing rapidly.
“Our team abstracted 1,500 cases last year,” she said. “The number of cancer patients has doubled in the last 10 years in Gwinnett, because the county is growing. Our job has gotten bigger.”
Fortier submits all abstracts to the state once a month and those go into the National Cancer Registry once a year.
“We are constantly updating the data, and the standards and technology are constantly changing,” she said.
The work is painstaking, detail-oriented and never ending, but Fortier loves it.
“I get to see the big picture of how each abstract feeds into the trends of what we know about cancer and its treatment,” she said. “I’m a perfectionist, but I can see how important it is to code everything correctly. We’re dealing with people’s lives.”
At Piedmont Hospital in Atlanta, Dolores McCord, RHIT, CTR, manager of oncology analytics, is a certified tumor registrar and a member of the oncology team.
“My job is slightly different, but then there is no such thing as a traditional cancer tumor registrar,” McCord said. “We come from medical records, pathology or administrative backgrounds and we all have different skills and responsibilities within our hospitals.”
McCord makes sure that the hospital is in compliance with reporting standards, and her office coordinates all oncology staff and committee meetings.
“At those meetings, the surgeons, oncologists, diagnostic radiologists and pathologists look at the radiology films and pathology slides that my team gathers to make recommendations about treatments,” McCord said. “Every specialist offers an opinion on each case, because they want to make sure each patient gets the best care for his [or her] circumstances.
“The director of oncology services relies on our data to help him plan oncology research and budget wisely. Are there enough cases to justify a clinical trial, for instance, or enough of one type of cancer to warrant buying new and costly radiation equipment?”
Making data work
Liver cancer is a growing specialty at Piedmont Hospital and the cancer data collected by registrars helps administrators focus on getting the right doctors on the team and providing the proper services.
“We’re now a referral center for liver cancers, because of our data,” McCord said.
McCord has found her spot in the field.
“I’ve worked with the tumor registry since 1989 and I love this work, because I do something slightly different every day,” she said. “I find the disease process interesting and I love statistics, so this is the perfect niche for me.”
When McCord started working on the cancer registry, there wasn’t much official training. She started with a medical records correspondence course, learned on the job and attended workshops.
Today, most cancer registrars have bachelor’s degrees and hold certification through the National Cancer Registrars Association.
It’s a challenge to keep up with the changing rules, standards and technology.
“The registrar’s prayer is, ‘Oh Lord, please let me finish this abstract before they change the rules again,’ ” McCord said with a laugh. “But I like the challenge and I can see how what we do affects what the hospital does.”