Findings Reveal Lack of Participants in Critical Research is Caused by Fear

A new review shows fear is the primary factor in the failure to recruit adequate numbers of participants for essential medical research.

Researchers at the University of York and Hull York Medical School found fear of testing new treatments and the possible side effects were common denominators among patients.

“Clinical trials are an essential part of developing new medicines and improving healthcare, but recruiting patients to take part is one of the biggest challenges researchers face,” said Dr. Peter Knapp, lead author of the study.

The research was conducted globally and looked at the results of over 400 studies on recruitment. Along with the concerns previously mentioned, participants also noted issues with privacy and confidentiality.

“Our review highlights how people are held back from taking part in research by their fears surrounding losing control of the treatments they receive and worries about possible side effects,” Knapp said.

According to the review, two-thirds of U.K. trials fail due to these fears leading to an insufficient number of participants.

Black, minority and ethnic patients expressed distrust in research and medical professionals as common reasons for not wanting to participate.

“Lack of trust was also identified as a common barrier for minority ethnic patients around the world -- perhaps a legacy of major historical violations of ethical standards in cases like the Tuskegee syphilis experiment,” Knapp said.

In contrast, researchers also reported the reasons people wanted to be part of studies.

Reasons included trust in doctors and staff, a desire to help and to be part of possible improvements in their own health.

The authors of the research are calling for the development of new methods to increase participation. Current methods may not be sufficient, according to their study. Phone reminders, personalized letters and other schemes designed to prompt memory and raise awareness are among the current efforts.

“There is a need for more research to identify effective recruitment strategies that draw on psychological theory and the facilitators and barriers identified in this overview,” Knapp said. “A desire to help develop better healthcare for others also came up as a strong reason for taking part in research and trials, and so this -- people’s sense of altruism -- is another possibility that could be explored as a way of appealing to people.”