Through a unique, nationally representative survey of 2,150 households in 2011, University of Michigan researchers found that only 11% of adults and 5% of children had ever participated in medical research. The study was published in January in Clinical and Translational Science.
About 11 percent of adults of all ages equals about 20 million research participants and 5 percent of children equals about 3 million, says the study's lead author Matthew Davis, M.D., M.A.P.P., an associate professor of pediatrics and internal medicine at the University of Michigan Medical School.
"Our study indicates that public awareness of opportunities, and the match of research needs with potential participant characteristics, potentially limit enrollment," says Davis, who is also associate professor of public policy at the Gerald R. Ford School of Public Policy at the University of Michigan.
"Researchers and institutions need to spread the word more effectively, to help people know about research opportunities that are a good fit for them," says Davis. "When institutions reach out to communities to hear and understand their needs, and then respond with resources, ideas and opportunities, that’s what we call engagement in research.
"When research institutions engage effectively with the public, that's when the public can benefit in tremendous ways from the research to which they contribute," says Davis.
Davis and his colleagues found that 64% of adults said they were aware of opportunities to participate in medical research, while only 12% of parents said they were aware of opportunities for their children to participate.
According to the study, race/ethnicity was not related to whether adults or children had participated or were aware of research opportunities, says the study's senior author Deb Gipson, M.D., M.S., associate professor of pediatrics and communicable diseases. This is quite important as health care needs to be effective for all of our citizens.
The National Institutes of Health by establishing its newest institute, the National Center for Advancing Translational Sciences (NCATS), has made considerable investment in bringing new medical ideas from the research laboratory into healthcare - a process that is called translational research. A central part of that investment has been through Clinical and Translational Science Awards (CTSA) provided to select research centers across the country, says Gipson.
As a component of their mission, CTSA sites are charged with establishing community engagement programs through which the centers can establish mechanisms for bi-directional communication about various research needs and opportunities as well as invite members of the public to participate in clinical and translational science initiatives.
"We hope this study can help advance medical research by highlighting opportunities to improve public engagement," Gipson says.
Advances in science and medical care depend on public participation in medical research, says Thomas P. Shanley, M.D., a co-author of the study and director of the Michigan Institute for Clinical and Health Research that houses the CTSA awarded to the University of Michigan. The institute, known as MICHR, leads the university-wide effort in translational research and will be launching an enhanced version of a research participant portal, UMClinicalStudies.org, this coming spring.
"Researchers are constantly challenged to reach out to and recruit adults and children to participate in studies that can change the way we treat diseases. We hope this study sheds light on new ways to address this challenge and encourage more participation in the science that can change and ultimately improve health outcomes, in our communities as well as around the globe," Shanley says.