The data backbone

General Article
July 18, 2002

In her 26th year, Janice Takashima knows that Wilms study has come a long way since center's pre-computer plotting of points on graph paper

With more than 25 years of center service behind her, Janice Takashima reviews data with Dr. Yevgeny "Gene" Grigoriev, fellow data coordinator for the National Wilms Tumor Study, based on the eighth floor of Met West. Photo by Gordon Todd

By BRAD BROBERG

When Janice Takashima tells new staff about the good old days, they say, "No way!"

She recalls when the entire Hutchinson Center had only one photocopy machine, when all of her group's data was stored in a computer at the University of Washington and when she and her colleagues created graphs by hand.

"When Dr. (Norman) Breslow hired me, he asked me how good I was at connecting dots," Takashima said. "In those days, there were no computer programs for generating statistical graphs. We had to plot the points on graph paper for our annual reports."

Takashima has begun her 26th year with the Public Health Sciences Division, serving almost all of that time as a data coordinator in the Data and Statistical Center for the National Wilms Tumor Study Group. Her long tenure makes her one of the group's unofficial historians.

Breslow, a center investigator and professor of biostatistics at the University of Washington, is the founder and director of the Data and Statistical Center. Over the years, his staff has compiled an enormous database in support of the group.

"We are the archives of the patient-research data of all the people who have registered for any of the five national Wilms Tumor Studies," Takashima said.

Formed in 1969, the National Wilms Tumor Study Group is a consortium of pediatric care specialists dedicated to developing and evaluating treatments for Wilms tumor, a kidney cancer named for the German doctor Max Wilms, who published the first description of it in 1899. It is the most common malignant kidney tumor found in children.

Ninety percent survival rate

The group is completing its fifth clinical trial. Thanks in large part to those trials, treatment - usually a combination of surgery and chemotherapy with or without radiation - has become so effective that about 90 percent of patients survive and go on to lead relatively normal lives.

Now, the focus has turned to studying the late effects of treatment on the more than 10,000 survivors, and their offspring, whose progress is being tracked by the Data and Statistical Center.

Takashima graduated from Lincoln High School in Seattle. After studying various subjects at several universities, she earned a history degree from the University of Washington.

Anxious to find a job as quickly as possible, she took the civil service exam and landed a temporary position as a clerk/dictaphone transcriber at the old U.S. Public Health Services Hospital in Seattle.

"I typed up the tumor board minutes and the pathology reports," she said.

Later, Takashima moved to medical records, where she learned how to perform discharge coding.

"It turned out I had a knack for coding," she said.

After 13 months at the Public Health Services Hospital, and with her temporary position expiring, Takashima began looking for a new job. In February 1976, she joined the Wilms Data and Statistical Center.

"My first question was, 'What's a Wilm?'" she recalled with a chuckle.

Today, the center has 13 staff, each with his or her own office and personal computer. But in the beginning, there were only two staff members and no such thing as personal computers.

Another big change since the early days is the scope of the staff's work. In the beginning, the bulk of their duties consisted of coding the patient data submitted from the field - "putting numbers in boxes," Takashima said - so others could enter it into a computer at the UW.

"Once you learned how to do it, you got kind of tired of it," Takashima said. "Nobody ever stayed that long at Wilms. It was like a steppingstone position."

However, as the years passed and staffers such as Takashima and longtime colleague Pat Norkool gained experience, their duties grew.

"When we started, our responsibilities were pretty limited," said Norkool, who joined the Data and Statistical Center in 1977 and is now the project manager.

"We used to open the mail and code follow-up reports. Now, we enter and review data, design forms and plan computer programs."

'Absolutely perfect' for job

Norkool said Takashima is "absolutely perfect for this kind of work. She gets a lot of satisfaction out of it and she's good at what she does."

Even so, Takashima did leave for a brief period with the goal of turning her part-time work as a beauty-products representative into a full-time career.

"I thought it would be a more fulfilling challenge," she said. "After I was gone, I realized I really liked this kind of work."

Six months later, she returned to Public Health Sciences, first in a part-time position with the Southwest Oncology Group and soon back in a full-time role with Wilms.

Takashima takes pride in serving as a valuable resource to doctors and researchers who need help accessing the database - 10 gigabytes and growing - to check treatment protocols or conduct new studies.

"The group's governing committee recognizes the work we do in this office," she said.

"As we've stayed here longer, we've become more valuable. We are very much responsible for the accuracy and consistency of the data."

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