Iowa: Raising Awareness of Clinical Trials

To accelerate home-grown medical innovation, Iowa researchers are raising awareness of local trials

Developing tomorrow’s treatments for diseases does not involve just researchers. Patients make new therapies possible by enrolling in clinical trials, but overall public awareness of these trials is low.

A group of clinical researchers in Iowa is looking to change that. Together they have formed the Iowa Coalition of Clinical Researchers (ICCR) in January 2014 to raise awareness of clinical trials among patients, healthcare providers and policy makers in the state.

“Perhaps this increased awareness can prime the pump and make people more interested in participating in clinical trials and adhering to some of the follow-up procedures that are necessary,” Gary Rosenthal, a principal investigator at the Institute for Clinical and Translational Sciences at the University of Iowa and a member of the ICCR, said.

Clinical trials require a significant time investment. To reach the market today, a new innovative therapy often requires 10 to 15 years of clinical testing, and can cost medical innovators more than a $5 billion dollars, according to estimates.

Increased participation in clinical trials could help speed this process. Patient enrollment issues have historically delayed more than 90 percent of clinical trials, according to a CenterWatch survey.

But most patients are not aware of the option of enrolling in a clinical trial. In a survey of 6,000 cancer patients, 85 percent were unaware that participation in clinical trials was even an option.

Each day that a clinical trial is delayed can cost between $600,000 to $8 million.

“We’ve done work surveying populations of Iowans and found that people are generally receptive to the idea of clinical trial participation and expect their physicians to inform them of clinical trials,” said Rosenthal. A Journal of Clinical Oncology study published in 2013 found that, when physicians did offer their patients the option of enrolling in a clinical trial, 51 percent of patients took advantage of the opportunity.

But physicians don’t often get that far. A 2013 survey conducted by the research advocacy organization ResearchAmerica! found that 70 percent of doctors do not talk with their patients about medical research.  Those patients who do hear about clinical trials most often do so through the internet or other media outlets.  Given the importance of a doctor’s advice, Rosenthal and colleagues are looking to raise awareness of trials among physicians as well as patients.

With over 65,000 registered clinical studies in the United States, the coalition believes there is a great opportunity for spurring medical innovation and saving lives.

“65,000 trials is a lot of trials, but if we could finish them in a more timely and efficient manner, that would have a large impact on the ultimate availability of innovative treatments as well as the cost of new treatments,” Rosenthal said.

Each day that a clinical trial is delayed can cost between $600,000 to $8 million, according to one industry estimate. The consequences are higher priced medicines and poorer health for patients who stand to benefit from innovative therapies.

Along with broadly networking with physicians to promote trials, the coalition is developing web-based methods to engage and inform wider populations; they are currently adding a new online registry that will alert Iowans of local trials, as well as multimedia trial consent forms that are easier to understand than the lengthy paper forms that typically frustrate patients.

Of course, clinical trials offer economic benefits to states as well. A 2011 study found that clinical trials in Iowa supported more than 14,000 jobs and generated $3.4 billion in economic activity.

That number could rise even further in 2014, thanks to efforts from the ICCR. Whether other states catch on to the potential windfall remains to be seen.

“If we can show that Iowa has become a preferred site to conduct clinical trials from the efforts we are doing in creating awareness and effectively advocating for clinical trials, then I think there could be evidence that this model could be exported to other states,” Rosenthal said.