Look for opportunities to save money. On the flip side, says Caligiuri, uninsured patients can sometimes get cutting-edge care for free by joining a clinical trial. A small fraction of cancer trials, for example, are conducted by community-based physicians rather than researchers at academic medical centers. Community-based trials tend to be funded by pharmaceutical companies that have a stake in getting results as quickly as possible—and may be loath to turn away willing volunteers for lack of complete insurance coverage. "It is often the case [that] the industrial sponsor will cover what is not covered by insurance," he says.
Look out for financial conflicts of interest. Researchers who pour hundreds of hours into a study need to be compensated. Some forms of compensation—such as payments made to researchers for each volunteer they take the time to enroll—are commonplace and generally noncontroversial. But certain financial relationships raise red flags in the eyes of some experts. Weinfurt advises patients to avoid trials in which a participating researcher holds a patent on the experiment drug or medical device or owns stock in the company that makes it. Those kinds of "equity relationships are more worrisome than are other financial relationships," he and several colleagues wrote in a paper that appeared last month in the New England Journal of Medicine.
Consider getting an independent medical opinion, especially if the doctor who suggests you join the trial is directly involved in it. Researchers have incentives to expeditiously fill all the volunteer slots in their trials, and while they're forbidden from pressuring patients to participate, a doctor with unbridled enthusiasm for the research might unconsciously influence a patient's decision. If a researcher will treat only patients who join his trial, says Weinfurt, "I personally would feel more comfortable getting a second opinion." To bring an independent doctor up to speed, adds Zarin, "print out the study record [available on clinicaltrials.gov] and bring it to your provider."
Know your motivation. Why are you considering a trial? You might be driven by a sense of altruism. Perhaps you want the money or the free medical attention that comes with participation in certain studies. Or maybe you're driven by a hope, however slight, that the experimental treatment will improve your health. No one motivation is inherently more valid than another. But being aware of what your objective is will help you evaluate whether a particular trial is a good fit.
Jovona Neal of Nashville recently signed up for a flu vaccine trial she saw advertised on Facebook because, she says, "it's a good way . . . to do something charitable." She had already received a conventional flu shot and figures the experimental one won't give her any additional immunity. But she also knows enough about flu vaccines to realize that developing a faster manufacturing process, which is a goal of the trial, could help millions of people, especially in years, like this one, when a pandemic strain breaks out.
Neal also carefully gauged her risk before signing up. She knows and trusts the company conducting the study, and she learned that the vaccine had already undergone uneventful preliminary testing in people. "This particular study was in its second phase," she says. If the shot had been unsafe, she figures, "it would never have made it to the second stage."
Since joining the flu study, Neal has been offered the chance to participate in another trial. That study needs volunteers willing to follow a low-cholesterol diet and take an experimental anticholesterol drug. "I'm not sure I'm going to do that one," she says. "I happen to be happy with my cholesterol medication. If I wasn't, I think I'd be more tempted."
Reader Comments Read all comments (197)