Altruism is a strong motivating factor for clinical trial participation in the general population and even more so among several minority groups. A significant percentage of African-Americans (61%), Hispanics (57%) and Asians (50%) say it's very important to participate as a volunteer in a clinical trial to improve the health of others, compared to 47% of non-Hispanic whites, according to a new national public opinion poll commissioned by Research!America.
These findings are tempered by the reality that participation remains disturbingly low among all groups. When asked if they or someone in their family has ever participated in a clinical trial, only 17% of Hispanics, 15% of African-Americans, 15% of non-Hispanic whites and 11% of Asians said yes.
Only about a quarter of African-Americans, Hispanics and Asians say they have heard about clinical trials from their doctor or other health care provider. The percentage is even lower among non-Hispanic whites (19%). On the positive side, a strong majority—75% of Hispanics, 72% of African-Americans, 71% of non-Hispanic whites and 65% of Asians—say they would likely participate in a clinical trial if recommended by a doctor.
"The poll reveals a willingness among minorities to participate in clinical trials to improve quality of health care, but enrollment remains stubbornly low," said Mary Woolley, president and CEO of Research!America. "We must continue to strive toward reaching all segments of the population to boost the level of participation in order to further medical progress."
Lack of trust is a major reason that individuals don't participate in clinical trials, according to more than half of African-Americans (61%), Hispanics (52%), Asians (51%) and non-Hispanic whites (54%). In fact, 40% of African-Americans believe people are enrolled in clinical trials without being told, compared to 36% of Hispanics, 35% of Asians and 27% of non-Hispanic whites who are of this opinion. When asked how important the competence and reputation of people of the institution conducting the research would be in the decision to participate as a volunteer in a clinical trial, 73% of African-Americans, 66% of Hispanics and 66% of Asians said very important, compared to 72% of non-Hispanic whites, reinforcing the importance of trust among all groups.
As is true for the population overall, the Internet is a main source of information for clinical trials among minority populations, followed closely by doctors. The poll findings illustrate the need for increased communication between patients and providers about clinical research.
"The views of minorities tend to mirror those of the general population in terms of their support for clinical trials overall and reasons why they and others do not participate," Woolley added. "It's imperative that health care providers and others help patients gain a deeper knowledge of clinical trials so all Americans can benefit from lifesaving treatments."
Many respondents believe health care providers should play a major role in raising awareness of clinical trials. In fact, 38% of Hispanics, 36% of Asians and 33% of African-Americans said providers have the greatest responsibility in educating the public about clinical trials, as did 42% of non-Hispanic whites.
Among other findings:
- Nearly half of African-Americans, Asians and Hispanics say they greatly admire individuals who volunteer for clinical trials, compared to 35% of non-Hispanic whites.
- About one-third of all respondents, including minority groups sampled, do not believe that they receive health care services based on the best and most recent research available and, further, say that we are not making enough progress in medical research in the U.S.
- Approximately three-quarters of all respondents said, assuming the correct privacy protections were in place, they are willing to share personal health information so researchers can better understand diseases and develop new ways to prevent, treat and cure them and to advance medical research.
- More than a third of Hispanics (37%) thinks a person receives better medical care if enrolled in a trial, compared to 29% of Asians, 26% of African-Americans and 27% of non-Hispanic whites.
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 for the sample sizes range from +/-3.8 to +/-5.7 percentage points.