Statistical truth in tracking

Science Article
March 4, 2004

Tracking Resource Center provides efficient tools to find and follow people who have consented to long-term participation in center, outside studies

Tracking Resource Center employees Teri Kopp, left, and Cathy Kirkwood help researchers track participants in numerous center cancer studies. photo by Todd McNaught

By MEGAN LEWIS

Center studies that shed light on how diet, smoking and other factors influence cancer risk must follow thousands of people throughout the country, sometimes for many years. While the prospect of determining the survival status or disease incidence of so many individuals would overwhelm the staff of a single study, the task is manageable for the experts at Fred Hutchinson's one-of-a-kind Tracking Resource Center (TRC).

One of 25 shared resources at the center; the TRC team provides services typically unavailable to other research centers or universities. They assist investigators and staff in tracing subjects who have been selected for research studies or who are lost to follow-up, said Cathy Kirkwood, TRC data operations manager. Individuals who are tracked consent to be followed for the duration of a study.

TRC users

A variety of center studies that rely on large numbers of participants, such as those that seek to uncover the causes of cancer, prevent the disease and test treatments, utilize the TRC. Although the TRC's services are open to all studies within the Fred Hutchinson/UW Cancer Consortium, Public Health Sciences Division researchers are the primary users of the resource.

"Tracking patients is important because participation rates have an enormous impact on the statistical strength of a study's results," Kirkwood said. "If a study has a set of participants that they have lost, finding 80 percent of those people versus 50 percent can make a big difference in the validity of their final analysis."

During this past year, the center tracked more than 20,000 participants with an 80 percent success rate, said Teri Kopp, TRC project coordinator.

In addition to benefiting researchers by providing a higher success rate in finding participants, the resource is cost and time efficient. The TRC is funded by the center's CORE Grant from the National Cancer Institute, PHS Center funds and income generated from a user-fee system for all services. The cost to use the TRC can vary from $1 to $30 per subject, a figure that depends on the number of subjects, the information available and the age of the information. Although the TRC has a fee for its services, the cost is significantly lower than similar locator services that use many of the same resources and methods. The TRC also has the ability to run batch searches, which greatly reduces the cost per subject.

Faster tracking

The TRC locates contact information in a faster, more standardized manner by using numerous resources approved by the Institutional Review Board (IRB), the committee charged with reviewing all human-subjects research.

"One big benefit the TRC offers the center is that we provide a systematic and IRB-approved method of ensuring that confidentiality is protected for each person searched," Kirkwood said.

The Tracking Resource Center is not limited to use by center researchers. Kopp said they will track research subjects for the University of Washington and Children's Hospital and Regional Medical Center (partners of the Cancer Consortium) as well as for other medical institutes in and outside of the state. Many institutes use the TRC because this type of service is uncommon, Kopp said.

"I am not aware of other research institutes with a shared resource in place such as the TRC," she said. State-of-the-art resources and techniques allow the TRC's experienced staff to locate participants crucial for quality research at the center. These methods can be categorized into two groups: TRC-purchased databases and online databases.

Database use

The Tracking Resource Center purchases the rights to use valuable resources that ensure the strictest privacy and confidentiality policy for the participants or patients, since their names are not released outside the center. These databases include Washington Department of Licensing, Social Security Master Death Files and Washington Death Index.

The TRC also uses online database services consisting of national change of address, electronic directory assistance and investigative information management services, which provide information from different public sources. Using Web-based resources creates confidentiality issues; therefore, the TRC only uses resources that provide a privacy policy or a signed confidentiality agreement with the center to ensure information about study subjects is protected.

The TRC staff consistently updates their databases and re-evaluates their resources so they can access the most recent information available as quickly and cost-effectively as possible.

For more information about the TRC, visit their Web site: http://www.fhcrc.org/shared_resources/tracking.

[Megan Lewis is a student at Western Washington University and a Center News intern.]

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