Lack of awareness and misconceptions keep cancer patients out of clinical trials, according to research by Harris Interactive released Jan. 22. While the study shows an alarming number of patients were never told about enrolling in a clinical trial, it also shows there is potential to increase patients’ participation in new research.

Four major cancer organizations sponsored the survey by Harris Interactive, a market research firm, to find out why it is so hard to find cancer patients to participate in clinical trials. The survey of 6,000 cancer patients found a simple answer: most patients don’t know about clinical trials that could help them.

Informing patients about the availability of clinical trials and helping them overcome their fears about them is enormously beneficial for cancer research, says Peter Risher, senior project director for Harris Interactive.

Approximately 85% of cancer patients were either unaware or unsure that participation in a clinical trial was available to them. Had they known, 75% said they would have enrolled.

There is a critical need for more adult cancer patients to enroll in clinical trials. The National Cancer Institute reports that approximately 45,000 cancer patients are enrolled in clinical trials at any given time—and this is not enough, says Ellen Stovall, executive director of the National Coalition of Cancer Survivorship. A clinical trial is a study designed to monitor the effects of a new drug on patients over time. Without the research findings these trials provide, new treatments for cancer that have the potential to save or extend lives are never approved for use.

According to Herman Kattlove, MD, medical editor for the American Cancer Society (ACS), doctors are reluctant to inform their patients about enrolling in a clinical trial. "Doctors don’t talk to their patients about clinical trials. They don’t want to deal with it. For one thing, they’ll lose the patient. And for a doctor to explain to a cancer patient the different treatment options available and what would be involved in a clinical trial is complicated. It takes time. Often, if a patient doesn’t ask about it, a doctor won’t bring it up."

Of the 16% of cancer patients interviewed who knew about clinical trials for their illness, three out of four were scared to participate in them. The reasons they gave suggest they may have been misinformed about what might happen to them during the trial. More than 30% believed they would be better off taking "the standard treatment." Many feared they would receive a placebo rather than actual treatment, although according to Kattlove, cancer trials rarely involve a placebo. Some patients said they were scared they would be treated like a "guinea pig" and worried their insurance carrier wouldn’t cover the cost of treatment.

However, the overwhelming majority of cancer patients surveyed who did participate in clinical trials reported their experience was positive. Ninety-seven percent said they were "treated with dignity and respect," and rated the quality of care they received as "excellent" or "good." More than 80% felt they hadn’t received more tests than they thought necessary and 86% said their treatment was covered by insurance. Seventy-six percent said they would recommend participating in a trial to someone else with cancer.

"Clinical trials have a lot to recommend them," says Kattlove. "The treatment will be at least as good as standard treatment, and most of the time, patients get excellent care. Their progress will be monitored very carefully to catch symptoms and side effects. And if one group is clearly doing better than another, the trial will stop and the treatment will be adjusted. No one will be left out if a better treatment is found."

Doctors need to inform their patients about clinical trials, and patients need to ask their doctors about participating. The Internet is also a good place to learn about clinical trials. The ACS Web site offers a detailed discussion of clinical trials and the National Cancer Institute posts a current listing of clinical trials in the US on its Web site.