© 1998 by Oxford University Press
Advocates have been a formal part of the breast cancer SPORE based at the University of California at San Francisco since its inception in 1992. Their example is spurring similar partnerships at other NCI-supported SPOREs and cooperative groups. The two main benefits of advocate participation mentioned by both sides are focus and a common language.
Easily Distracted
"It's easy to become distracted when doing scientific research and follow things of scientific importance but not necessarily translational importance. Advocates bring a continual reminder that this is breast cancer we're working on, not one's research career. They provide a centering force all the time," said Joe Gray, Ph.D., principal investigator for the San Francisco breast cancer SPORE.
Deborah Collyar described the challenge: "Researchers become experts in the letter Q and can tell you all about Q. But they forget that it's only part of the alphabet." Collyar is an advocate member of the UCSF SPORE and president of Patient Advocates in Research (PAIR), a northern California-based movement to involve advocates in cancer research. "As people living with the disease, we have to look at the big picture to put our lives back together. We help bring that larger picture into focus."
The SPOREs receive NCI support to do research designed to move laboratory discoveries into patient and population research settings. Of the 14 SPOREs, six focus on breast cancer, three on prostate cancer, three on lung cancer, and two on gastrointestinal cancers. A concept for an ovarian cancer SPORE received approval at the spring meeting of the National Cancer Advisory Board.
A Common Language
Because the SPOREs are focused on translational research, epidemiologists collaborate with geneticists, molecular biologists, and surgeons. Each specialty has its own language. "Frequently, when someone discusses [his or her] research, if they fall into their jargon, not only do the advocates not understand, but neither do the other scientists." said Marc Shuman, M.D., professor of medicine and associate director for research, education, and training at the UCSF Cancer Center. People now speak in a way that everyone can understand. As a consequence, there's a lot more discussion. "I credit the SPORE advocates for accomplishing that," added Shuman.
In the UCSF SPORE, the advocates participate in biweekly research discussions, an annual retreat, and informal multidisciplinary discussion sessions. The 100 or so advocates who are part of that SPORE help with trial design, enrollment, Institutional Review Board approvals, and raise money.
"We are partners. We have an active voice in all decisions," Collyar said. "Some researchers quake when they hear that. But it works." Gray vouched for the integral role that the advocates play. "They are a continual presence in everything. We benefit from and enjoy their participation."
Shuman admitted to being a skeptic about the collaboration at first. "I didn't expect they'd be helpful in any way. I thought they'd be obstructive. Now I'm a convert."
According to Collyar, clinical trials have traditionally been designed from the scientific viewpoint. "The people we want to attract into these trials are never considered until the trial is already planned and it's time for accrual." As a result, barriers to participation are built in. The advocates review eligibility criteria, informed consent documents, and ask about the necessity of frequent invasive tests. Collyar and her colleagues also convinced Kaiser Permanente, a major managed care provider in the Bay Area, to cover patient care costs for members enrolled in local SPORE studies.
Catching On
"The San Francisco group served as a model for some of the other SPOREs," said Andrew Chiarodo, Ph.D., who retired in August as chief of NCI's Organ Systems Branch, which oversees the SPORE program. "The other SPOREs are beginning to see that the advocates can play an important role in their activities," he added.
To date, advocacy involvement is really confined to the breast cancer SPOREs. The breast cancer SPORE based at the University of Texas Health Sciences Center at San Antonio counts on advocates to educate the community about clinical trials and the SPORE's activities. Advocates also came to the SPORE's aid to push the state legislature for discrimination protections for people who undergo genetic testing, according to Dale Eastman, who initiated the relationship between the SPORE and local advocates and is president and founder of the Alamo Breast Cancer Foundation. Thirty San Antonio volunteers have been trained by Collyar's advocacy group -- PAIR -- and will soon be assigned to relevant SPORE projects.
For the Department of Defense breast cancer research grant at Georgetown University in Washington, D.C., patient advocate Margaret Borwhat serves as a conduit to a larger group of patients who review materials and surveys to improve their readability and sensitivity. She was recently asked to do the same for Georgetown's SPORE. That group is also looking at ways that patients who have gone through clinical trials can guide those considering or just beginning the process," Borwhat said.
The North Carolina breast cancer SPORE also has active advocate involvement. Collyar said she hopes to see efforts expand to the SPOREs that focus on other cancers as well.
Advocates' roles have been expanding within the National Cancer Institute in recent years. Along with membership on the National Cancer Advisory Board, consumer representatives are members of NCI's Board of Scientific Advisors, which reviews extramural research, and are soon to be appointed to the subcommittee of the Board of Scientific Counselors that advises on intramural clinical and epidemiologic research; and they participate in the Progress Review Groups, which advise the NCI director on breast, lung, and prostate cancers. NCI plans to enlist consumers for reviews of the cancer center planning grants and the clinical cooperative group cooperative agreements. The NCI Director's Consumer Liaison Group brings patient and consumer input to the institute on important issues and was recently chartered by Congress as a top level advisory group within the government.
Along with NCI, some of the cooperative groups, such as Cancer and Leukemia Group B and the Southwest Oncology Group, have included advocates in their activities.
Training Is Essential
Hands-on involvement in research planning calls for heavy duty training and continuous science education. Many of the advocates have been through Project LEAD, a science training program for advocates run by the National Breast Cancer Coalition, and receive assistance from PAIR to "bring patient viewpoints into medical research to improve the process for everyone involved."
"This only works if the advocates are really willing to make almost a career of it," said Gray. "That's a little strong, but the point is that if they're not heavily involved, they won't understand and it will slow the process down."
Borwhat agreed. "None of us want to distract or slow down the research. Our goal is to speed the process, smooth the process, and not put any bumps in the road."
-- Cori Vanchieri
Patient Advocates Help Researchers Avoid "Bumps in the Road"
When it comes to patient advocates and medical researchers, some envision worlds colliding or impassable bridges. But a few trailblazers within the Specialized Program of Research Excellence (SPORE) are convincing skeptics that strong bonds can be forged between these diverse camps for a better research program.
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