Education essential for Americans who want to participate in clinical trials but don’t know how

The majority of Americans would participate in clinical trials if recommended by their doctor, but only a small percentage can remember their doctor or another health care professional ever bringing up the topic.

According to a national public opinion poll commissioned by Research!America, which was published in June 2013, more than two thirds (72%) of Americans says it is likely they would participate in a clinical trial if recommended by their doctor, while only 22% can recall a health care professional ever talking to them about medical research. A wide majority (80%) say they have heard of a clinical trial, but more than half (53%) have come to this knowledge through the Internet and only 24% through talking to a doctor or other health care provider.

Moreover, the survey found that only 16% of those polled say they or someone in their family have ever participated in clinical trials, citing reasons including lack of awareness (53%), lack of trust (53%), concerns that it’s too risky (51%), adverse health outcomes (44%), little or no monetary compensation (35%), privacy concerns (27%) and worries that it takes too much time (27%).

The results of this survey clearly point to the need for improved education about the importance and benefits of clinical trials, stated John Lewis, vice president of public affairs at the Association of Clinical Research Organizations, a co-sponsor of the poll.

He emphasised: "More participation in clinical trials means more treatments being made available to patients sooner. Industry, academia, government, physicians and patient advocates must all work together to encourage people to participate in this lifesaving research."

Indeed, clinical trial volunteers are currently vastly under-appreciated by Americans. When asked how much they admire volunteers, nearly 70% say they admire organ donors a great deal, followed by admiration for people who give blood (61%); clinical trial volunteers are admired by only 37%.

Clearly, this needs to change. "Health care providers and others must do more to increase trial participation through education and active engagement with patients," stressed Andrew Balas, MD, board member of the Friends of the National Library of Medicine, another co-sponsor of the recent poll.