Long-Term Follow-Up

Kathy Erne, Retired

"They are not just a number"

Kathy Erne, now retired, was among the first to gather valuable transplantation data

Kathy Erne

When Drs. George McDonald and Ted Gooley published a study on mortality among transplant patients, Kathy Erne was gratified to learn that increases in patient survival rates had been statistically verified.

There were a couple of very strong reasons for her joy. "The first thing I thought was, ‘how fantastic it is to see patients living longer and longer,’" she said.

And as the patient database manager with LTFU, she is always happy to help researchers gather much-needed information for their studies.

"I feel a sense of accomplishment when I see their papers published," said Erne, who was one of the very first Hutchinson Center employees to begin gathering medical information on transplant patients more than 38 years ago.

"Researchers need to have data structured in a certain way, and I love helping them. I want them to succeed because it ultimately helps patients," she said.

Erne came to the Center in 1973, when it was just beginning to collect what was to become extremely important patient data, the kind of information that has led to refinements and better outcomes for transplant patients.

In its beginnings, data gathering was a modest task, and Erne was asked to develop the data entry programs and collect clinical data to improve the information base.

This allowed the statistical analysis that would be pertinent to the work at hand—which was saving the lives of pioneer patients at the time.

"When the unit was at Providence Hospital, we sat right behind the nurses’ station, so we had a front row seat to gather information and follow the patient’s course. Everything was there—treatment data, infection data, engraftment data," she said.

"During that time, I didn’t see very much of the patients because they were isolated to prevent infection. But I really got to know some of the families, and grew quite close to them.

"The physicians, nurses, support staff, lab technicians, cooks and cleaning staff were all an integral part of the team. It was very much like a big family," she said.

Today, she is in awe of how much treatments have improved outcomes, and she reserves her biggest compliments for former patients.

"Patients recognized they were making a contribution to those who would come after them," she said. "They were very inspirational. Today’s patients continue to be extremely important to improving treatments for themselves and for those to come."

As database manager, it’s her job to keep the Center’s connection to former patients. But every once in a while, LTFU loses contact with a patient. They have dropped off the radar.

"It’s exciting and fulfilling when we renew ties with them," she said.

"What we want all of our survivors to remember is that they are not just a number. Without them, we lose information that is valuable for researchers to help improve the quality of life for them and future survivors," she said.