Only 11% of adults and 5% of children in the US have ever participated in medical research, a new University of Michigan study indicates.
That was despite 64% of adults in a nationally representative survey run by Dr Matthew Davis and colleagues saying they were aware of opportunities to take part in medical research. Only 12% of the parents surveyed, though, were aware of opportunities for their children to participate in medical research.
“Our study indicates that public awareness of opportunities, and the match of research needs with potential participant characteristics, potentially limit enrolment,” commented Davis, an associate professor of paediatrics and internal medicine at the University of Michigan Medical School.
In the survey of 2,150 US households, results from which were published in the January issue of Clinical and Translational Science, no correlation was found between race/ethnicity and whether or not adults or children had participated in medical research.
Some other studies have suggested that African-Americans, for example, may be wary of getting involved in medical research because of past abuses such as the Tuskegee syphilis experiment.
Spread the word
According to Davis, researchers and institutions in the US need to “spread the word more effectively, to help people know about research opportunities that are a good fit for them”.
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”, he added.
The study was funded by the National Center for Advancing Translational Sciences – formerly known as the National Center for Research Resources and part of the US National Institutes of Health.
One condition of the Clinical and Translational Science Awards (CTSAs) made by the Center to research sites across the US is that sites should establish community-engagement programmes to implement mechanisms for bi-directional communication about research needs and opportunities, as well as inviting the public to participate in clinical and translational science initiatives.
The University of Michigan administers its own CTSA through the Michigan Institute for Clinical and Health Research, which will launch an enhanced version of its research participant portal, UMClinicalStudies.org, this coming spring.