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More than two-thirds (72%) of Americans say it’s likely they would participate in a clinical trial if recommended by their doctor, but only 22% say a doctor or other health care professional has ever talked to them about medical research, according to a new national public opinion poll commissioned by Research!America. A wide majority (80%) say they have heard of a clinical trial — more than half (53%) through the Internet and only 24% from a doctor or other health care provider.
Only 16% of those polled say they or someone in their family have ever participated in clinical trials. Respondents believe individuals don’t participate because of a lack of awareness (53%), a 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 findings point to the important role of health care providers in talking to their patients about clinical trials. “It is critical for providers and health systems in the U.S. to recognize the importance of generating knowledge about which treatments are best through participation in clinical trials,” said Robert Califf, MD, vice chancellor of clinical and translational research at Duke University Medical Center, a co-sponsor of the poll. “Advances in common diseases like Alzheimer’s and diabetes, as well as rare diseases, depend on physicians and other members of the health care team offering their patients a chance to participate in clinical trials.”
The survey reveals that Americans are willing to share their personal health information — assuming that privacy protections are in place — for a number of purposes: so researchers can better understand diseases and develop new ways to prevent, treat and cure them (74%); so health care providers can improve patient care (72%); so public health officials can better track disease and disability (67%); and to advance medical research (73%) – an increase from the percentage seen in a similar poll a year ago (66%).
“Most Americans believe in the promise of research and are willing to share their personal health data to advance research; yet for many years now the percentage of people who participate in clinical trials has remained incredibly low,” said Mary Woolley, president and CEO of Research!America. “The poll reveals certain challenges for recruitment, but it also gives us clues on how to overcome those barriers.”
Indeed, many Americans remain hesitant about many aspects of clinical trial participation. Some (31%) are concerned that patients are enrolled in trials without their knowledge, and nearly a third (28%) are unsure if this happens. Less than half (46%) believe that the health care services they receive are based on the best and most recent research available.
“There is clearly a need for more education about the importance and benefits of clinical trials,” said John Lewis, vice president of public affairs at the Association of Clinical Research Organizations, a co-sponsor of the poll. “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.”
Compared to other ways volunteers contribute to the health of society, clinical trial participation is neither as visible nor as much admired. 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%.
“Americans undervalue the importance of clinical trials in developing new drugs and other therapies,” said Andrew Balas, MD, board member of the Friends of the National Library of Medicine, a co-sponsor of the poll. “Health care providers and others must do more to increase trial participation through education and active engagement with patients.”
Among other findings:
• 60% of Americans say they would go to their doctor to get information about clinical trials; 57% would search online.
• 41% say doctors and other health care providers have a responsibility in educating the public about clinical trials.
• When asked how often participants in clinical trials are treated fairly and with respect, 45% said all the time, 25% said not sure, 22% said occasionally, 6% said rarely and 2% said never.
• When asked how important each of the following factors would be in the decision to participate as a volunteer in a clinical trial, 89% say the reputation of the people or institution conducting the research and the opportunity to possibly improve their own health is important, followed by whether medical bills are covered if injury occurs as a result of the study (88%); the opportunity to improve the health of others (86%); their physician’s recommendation (80%); privacy and confidentiality issues (79%); and whether they would be paid to participate (77%).
The nationwide survey was conducted by Zogby Analytics for Research!America, the Association of Clinical Research Organizations, the Clinical Research Forum, the Friends of the National Library of Medicine and the Clinical Trials Transformation Initiative. The margin of error is +/-3.2 percentage points.
To view the poll, visit: http://www.researchamerica.org/2013clinicaltrialspoll