An overwhelming majority of Americans (86%) agree that healthcare professionals should discuss clinical trials with patients diagnosed with a disease as part of their standard of care, according to a new national public opinion survey commissioned by Research!America. And three-quarters of respondents (75%) agree that taking part in clinical trials is as valuable to our health care system as giving blood. But Americans are split on whether it's important for everyone to take part in a clinical trial if they are asked—44% agree while 45% disagree and 12% are not sure. A higher percentage (74%) said they would participate if they are asked by someone they trust.
Eighty-percent of respondents say they have heard of a clinical trial, but only 18% say they or someone in their family has ever participated in one. More than half (55%) say individuals do not participate because of lack of awareness and information, followed by "too risky" (43%), lack of information about the process (41%), and lack of trust (38%). Nearly two-thirds (64%) say a doctor or healthcare provider is a reliable source for clinical trial information. Americans say doctors and other healthcare providers (44%), followed by the government (23%) have the greatest responsibility in educating the public about clinical trials, but a strong majority (74%) say neither their doctor nor other healthcare professional has ever talked to them about medical research.
A plurality of Americans (44%) agree that clinical trial participation should be a routine health behavior, whether healthy or ill, similar to getting an annual checkup with a health care provider. Men are significantly more likely to say participation should be routine (48%) than do women (39%). A larger percentage of 18 to 29 year olds (53%) and 30 to 49 year olds (48%) agree compared to those 50 to 64 (38%) and 65 and above (34%).
The findings reveal a positive shift in public attitudes about clinical trials since a similar comprehensive survey was commissioned in 2013 by Research!America and partners. In the current survey, 37% of Americans say they would 'very likely' participate in a clinical trial if their doctor recommended, an 11% increase from 2013. Eighty-four percent are willing to share personal health information, assuming that appropriate privacy protections are in place, so researchers can better understand diseases and develop new ways to prevent, treat and cure them, a 10% increase, and 82% say they would share information to advance medical research, a 9% increase. When asked how much you admire people who volunteer for clinical trials, 46% said 'a great deal,' a 9% boost.
"More and more Americans appear to recognize the value of clinical trials - a very positive sign, but stubborn barriers to participation remain in place" said Mary Woolley, president and CEO of Research!America. "Development of incentives to drive more discussions between patients and healthcare professionals about the importance of participating in trials could encourage both ill and healthy individuals to view this as a routine health behavior." The results also indicate a willingness to tap into digital platforms for data sharing. A majority (72%) say they are likely to use technology such as apps, phones and monitoring devices to share their personal health data for clinical research. And nearly half (47%) say they like having clinical trial information/data/results delivered through their phone. A strong majority (88%) agree that participants should have access to results of clinical trials.
"We are pleased to have joined with Research!America in commissioning this important survey," said Doug Peddicord, executive director of the Association of Clinical Research Organizations (ACRO), "and gratified that the public's knowledge of and attitudes toward clinical trials have moved in positive directions since 2013. The option to participate in a clinical trial, when appropriate, should be a routine part of the health care encounter and ACRO will continue to work with Research!America and others to spread that message to doctors and patients alike."
The survey contains significant insights on factors important to clinical trial participation including competence and reputation of people or the institution conducting the research (91%); closely followed by opportunity to improve your own health and understanding potential risks and benefits (90%); whether you would have medical bills covered if you had an injury from the study (89%); the opportunity to improve the health of others (87%); having an expert guide you through the clinical trials process and the location of the clinical trial is easily accessible (86%).
Among other findings:
The nationwide survey of 1,000 U.S. adults was conducted by Zogby Analytics for Research!America and the ACRO in July 2017. The margin of error is +/- 3.1 percentage points.