clinical trial development is key to enrolling the large number of patients needed to conduct clinical trials of innovative targeted interventions. “We as patients have the unique ability to be able to look at a proposed piece of research and tell you if a patient would be willing to participate in your experiment while we’re trying to stay alive,” he said.

For example, he said one proposed study reviewed by a patient advocate gave patients the option of being randomized to one of two treatments already available on the market. As Gavin described it, “The advocate asked the principal investigator, ‘Why would a patient or their oncologist choose to be on this trial with such totally different arms, when both treatment options exist now and he would not be bound by the randomized coin flip if he had them outside of a trial?’” This comment led to the trial being restructured, Gavin reported, adding that without input from the patient advocate, “the trial would have likely gone ahead and huge investments would have been wasted because the trial would not have accrued because local oncologists and patients would not have bought into it.”

Gavin stressed that the large numbers of patients treated in community settings are especially needed for precision medicine studies, adding,

We have to engage the broadest possible patient community in order to make clinical trials and personalized medicine possible. The nature of personalized medicine will not allow for a few thousand patients involved in answering a single question, but tens of thousands of patients answering thousands of questions. That patient community doesn’t exist if we only look to the large cancer centers. We have to be able to reach out to every hospital and other settings where patients live and convince them they need to participate in clinical trials if we are to achieve [real progress]. Patient advocates can make these essential partnerships with patients a reality.

Gavin noted that there are a number of things patient advocates can do to help boost accruals to clinical trials, including

• developing strategies that accelerate study development, activation, accrual, participation, and reporting;

• ensuring selection of trials that affect clinical outcomes for people with cancer;

• educating the public on the availability of clinical trials as a treatment option;

• developing patient-centered materials to help treating physicians discuss trials with patients; and

• publishing and disseminating clinical trial results in plain language.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement