DETROIT, Michigan — There are exhibits about flying planes and going to the grocery store. So why not one about participating in a clinical trial?
The Detroit Science Center will this fall include the process of patients trying out the safety and effectiveness of new drugs or medical devices in its new health-care exhibit. It’s created through a $100,000 National Institutes of Health grant and efforts at the University of Michigan Health System to increase the participation in clinical trials.
But can informed consent be fun?
“It is a bit of a challenge to make it interesting and have substance,” said Dr. Michael Fetters, an associate professor in Michigan’s Department of Family Medicine who conceived of the exhibit. “The challenge for us to make it meaningful and not overwhelming.”
The clinical trials exhibit is at the tail-end of a broad 15,000-square-foot health exhibit planned by the science center. In one section, participants will be assigned a disease and move through the health-care process. Near the end, some will be “eligible” for a clinical trial.
The select few will learn about their study, its risks, benefits and alternatives, as well as how information will be confidential and the compensation they will receive, among other things. Participants will give their approval to joining the trial via an electronic touch screen, Fetters said.
“It really is an untested venue to try and inform the public’s opinion about what research is about, and dispel myths and fears about being in a research study,” Fetters said.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Fetters project is one of the more unique approaches in the hunt to increase participation in clinical trials. Vanderbilt University is leading the creation of Researchmatch.org — a national volunteer registry to recruit patients who want to participate in clinical trials.
Cleveland’s University Hospitals Ireland Cancer Center earlier this year released a video (at left) to better explain the clinical trials process.
The University of Michigan has used another two grants to take a grassroots approach to promoting clinical trials. In March, it hosted a panel discussion and screening of In The Family, a first-person account of coping with the consequences of genetic testing, at the local public library. The university also is using focus groups to redesign its Institute for Clinical & Health Research Web site and continuing to develop touch-screen kiosks scattered throughout the health system that match patients to clinical trials.
“There is a lot going on nationally,” said Dorene Markel, managing director of the Michigan Institute for Clinical & Health Research.
Fetters thinks the clinical trials exhibit serves two purposes: build an interest and understanding of clinical trials in people when they are very young, and rebuild confidence among skeptics of the ethics of clinical trials. Child participation in clinical trials is generally high, but it wanes significantly as people age, according to clinical trials research. He wants to cement awareness to increase participation in the long term.
Fetters also thinks the legacy of the Tuskegee syphilis study, in which participants were denied effective treatment, emboldens mistrust in minority communities about the honesty of clinical trials.
“It’s a place to see and experience,” Fetters said of the science center. “You can touch electric balls and your hair goes crazy. But it’s also a neutral trusting, environment.”
[Front-page photo courtesy of Flickr user sheep purple]
