Data: The New Tool in Fight Against Cancer

Charleston Daily Mail (WV)

August 3, 2012

When doctors at Charleston Area Medical Center (CAMC) need data on cancer, any kind of cancer, they come to Ebenetta Rhinehart.

Rhinehart, CAMC’s manager of coding and data registry, is in charge of the hospital’s tumor registry, which contains decades of information about the thousands of patients who have received treatment at the hospital.

The hospital has four full-time employees dedicated to the tumor registry, and their jobs require much more than simple data-entry skills. The hospital’s electronic medical records system automatically flags any pathology report that’s positive for cancer. Tumor registry staff members review each of those reports.

The workers then wait about six months to make sure patients are finished with their first course of treatment before putting them into the database. Every cancer patient who is diagnosed at CAMC or receives treatment at its hospitals is entered into the computer database.

Rhinehart said staff members try to find every bit of information possible about patients’ cancer, collecting information about hospital stays, reports from oncologists, dictations from surgeons, and details of their chemotherapy or radiation treatment, among other information.

Workers collect information on demographics, such as patients’ occupations and where they lived when they were diagnosed. They track the histology of cancer, where it first appeared, how advanced it was when doctors first diagnosed it and what treatment doctors prescribed.

Sometimes, registry staff members call doctors and other hospitals to get information if patients also received treatment somewhere else. Workers also keep track of patients after their treatment is completed. “We track that patient every year for the rest of their life to see how they’ve responded to that treatment,” Rhinehart said.

They keep track of patients by contacting their physicians, who usually can give follow-up information. If the patients switch physicians, record keepers send patients simple questionnaires or call them for interviews. “The patients tend to respond very well,” she said.

Following orders

CAMC is required to keep track of its former patients for the database to keep its accreditation with the American College of Surgeons’ Commission on Cancer. Hospitals are required to keep track of 80% of former cancer patients. CAMC has updated information on 93%.

“We track that so that we have all this ability to do research and look at how treatment is affecting (patients),” Rhinehart said. “It will change care.”

In fact, the information collected in the database already has changed cancer care. Rhinehart said that years ago, most doctors treated breast cancer with radical mastectomies. But using the data collected in CAMC’s tumor registry and similar databases around the country, oncologists eventually realized that incredibly invasive approach wasn’t necessary.

“They found removing the mass and doing radiation was just as effective as doing radical mastectomies,” she said. “The obvious choice is to do less invasive. It radically changed how we treat breast cancer, based on the data in the registry.”

Information in the database is added to a statewide cancer database, which contributes information to a national cancer database. The registry also has old paper records dating to the 1950s, but Rhinehart said that information isn’t very useful because doctors now understand cancer and cancer treatment much better than they did a half-century ago. “What we collected in the ’40s and the ’50s is nothing compared to what we collect now,” she said.

Since 1985, all new patient records have been collected in a computer database, which makes the information accessible for researchers. Rhinehart said database staff members usually work on two or three studies each month with hospital doctors. “The doctors do a lot of research in the cancer area, and then they’ll call us,” she said.

For example, one doctor is currently researching how patients’ nutrition affects kidney cancer. Rhinehart said that person will have company soon because the tumor registry staff eventually will work much more closely with doctors.

Movin’ on up

The registry currently is based in CAMC’s records facility in Kanawha City, WV. Rhinehart and her crew moved into the nondescript office building near Lowe’s and Cracker Barrel about two years ago. But they eventually will have much fancier digs at CAMC’s new $39 million David Lee Cancer Center.

“We’re so excited because when we’re located with radiation and with the David Lee Cancer Center, we’ll get the opportunity to get into their records and draw out information we may be skipping over or we may be looking over now,” Rhinehart said, adding that it also will give tumor registry staff a chance to talk directly with doctors about their patients.

CAMC plans to break ground in January, and hospital officials hope to finish the project by December 2014. The hospital is depending on the community to help raise $15 million of the new 100,000-square-foot center’s $39 million price tag. So far, the CAMC Foundation has raised $11.6 million.

For more information on the project, or to donate to the new cancer center, visit www.camcfoundation.org.