Who Participates in Medical Research?

Who Participates in Medical Research?

February 13th, 2013 // 3:41 pm @

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This will probably not come as a shock, but just 11 percent of adults and only 5 percent of children in the US have ever participated in medical research, according to a recent survey. Yet, this is not due to ignorance – 64 percent of adults and 12 percent of parents of children younger than 18 years of age who have not participated in research reported they were, nonetheless, aware of research opportunities.

Participation and awareness among adults were associated with higher income and education, older age, the presence of chronic conditions and living within 100 miles of four Clinical and Translational Science Awards locations. The CTSA consortium was created by the US National Institutes of Health and numbers 60 medical institutions nationwide that are supposed to run community engagement programs to jumpstart research participation, among other things (read more here).

In fact, slightly less than two-thirds of the 2,150 respondents lived within 100 miles of at least one CTSA. Of course, that still may not be convenient for those who do not live near a CTSA. After all, unless a person determines their health, or the health of their child, requires them to schlep, convincing people to drive long distances – and, in some cases, fight traffic – can be a hard sell.

As for children, participation and awareness were associated with higher household income and parental chronic health conditions. The results of the survey, which was conducted in 2011, were recently published in Clinical and Translational Science and the study authors say the findings indicate not only that awareness is low, but a better job should be done of matching research with the potential pool of patients.

After all, 11 percent of all US adults amounts to some 20 million people with experience participating in medical research, while 5 percent of all children equals about 3 million individuals. Even if half of them chose to participate again, more than 10 million people would be available, which is not too shabby. In fact, the study authors suggest this may be more than enough to supply research needs (here is the abstract).

“Our study indicates that public awareness of opportunities, and the match of research needs with potential participant characteristics, potentially limit enrollment,” says lead author Matthew Davis, an associate professor of pediatrics and internal medicine at the University of Michigan Medical School and an associate professor of public policy at the Gerald R. Ford School of Public Policy at the University of Michigan, in a statement.

But where do people obtain information about research opportunities? It’s not the Internet. Among adults, 53 percent cited television, 46 cited radio, 44 percent mentioned newspapers ads, 22 percent pointed to the Internet and 21 percent named pamphlets in a doctor’s office. The reality may be different today, if only because the Internet has become even more pervasive. Still, the data is sobering for proponents of using the Internet for trial recruitment.


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