At the conference, hosted by the Institute of Medicine (IOM) , regulators, industry and others discussed how poor patient engagement is hindering clinical trial recruitment and retention.
Richard Murray, head of the global center for scientific affairs at Merck & Co, said public mistrust of clinical trials, science, and the motives of the pharmaceutical industry is limiting recruitment.
Murray also said the relatively high standard of care in the US means many patients have already had some type of treatment. In search of treatment naïve patients contract research organisations (CROs) and biopharm and have entered new markets, but this could create further trust problems.
“This trend could be perceived as posing ethical problems, especially if the treatments being tested are not available in the overseas patients’ own country”, the IOM quotes Murray as having said.
Reversing the trend
Building trust through community outreach and education is one of seven elements of a successful clinical trial, Juan Lertora, director clinical pharmacology program at the NIH (US National Institutes of Health) Clinical Center, said.
A NIH initiative is focused on improving recruitment through better patient engagement. “The Clinical Center will participate in an aggressive campaign to engage the public in the clinical research process”, John Gallin, director of the NIH Clinical Center, wrote in a Nature Medicine article .
Presenters at the IOM conference highlighted several success stories that suggest the public want to take part in clinical trials. Many of these came from patient groups and consumer-oriented organisations that take a different approach to clinical trial engagement.
“Use of a web interface to provide registrants with instant feedback on survey questions is in striking contrast to the lack of information that participants in conventional trials receive”, the IOM quotes Nancy Sung, senior program officer at Burroughs Wellcome Fund, as having said.