YORK, England — Studies conducted by research institutions around the world help unlock medical mysteries and shed light on human behaviors. But many also require participants to risk their health as human guinea pigs of sorts, be it testing new medications or following a certain diet or lifestyle change so scientists can better understand effects on the human body. A new study finds, however, that many people are too afraid to take part in studies.
Researchers at the University of York found that the top reason why up to two-thirds of British clinical trials — those which test medication and perform other vital medical research — can’t recruit their target participant numbers is fear. The research review, conducted in collaboration with Hull York Medical School, concluded that anxiety over testing new treatments and possible side effects is what keeps most people from taking part in such trials.
The research team analyzed results from more than 400 studies around the world which examined the reasons why people do or do not participate in health and medical studies. The study showed that privacy and confidentiality concerns increased dramatically over the past ten years.
The researchers attempted to segment their review to find trends for different groups of people and their tendencies to participate or not participate in clinical trials. One group the researchers focused on was black and other minority participants. In these communities, distrust in research and medical professionals was a common reason for not participating in medical research. Researchers agree that new ways of inviting participation are needed to directly address patient fear, anxiety, and motivations.
Study lead author Dr. Peter Knapp, of the Department of Health Sciences at Hull York Medical School, explained that clinical trials are a crucial step in the development of new medication and in the improvement of healthcare as a whole. Yet many research teams struggle to recruit patients for testing.
“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 says in a media release. “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.”
Individuals that did participate in clinical trials were chiefly motivated by a desire to help others and the potential to help improve their own health, the researchers concluded.
Most of the common recruitment methods used by medical researchers in the UK to recruit testing participants are designed to raise awareness and remind people of the trials and their importance. This is primarily done with phone reminders and personalized letters to patients. Dr. Knapp and his team have shown that these methods aren’t effective enough to recruit the participants needed for medical trials.
“Feelings of fearfulness are clearly a key issue and so it would make sense to look at interventions focused on directly addressing patient concerns,” said Dr. Knapp. “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.”
The study was published in the journal Trials.