LAWRENCE — To truly design health care for individuals that avoids a “one size fits all” approach, one must understand the population they are serving. A University of Kansas-led study is underway to gauge underserved populations’ understanding of cancer clinical trials and how they can better communicate their purpose and function in order to increase participation among those who have traditionally been underrepresented.
Researchers from the William Allen White School of Journalism & Mass Communications have partnered with the Health Communication Research Shared Resource of the KU Cancer Center and Midwest Cancer Alliance to find out what are the most important barriers for the elderly, racial minority populations and those living in rural areas to participate in cancer clinical trials. The findings will be used to inform the development of a strategic communication plan specifically designed to increase understanding of clinical trials and encourage participation.
“Participation in cancer clinical trials has traditionally been statistically very low,” said Joseph Erba, assistant professor of journalism and study co-investigator. “It’s even lower among certain minority populations, which are underserved to start with. The literature we have now mostly does not consider these populations. In this study we do, plus we focus largely on the Midwest and how the message can and should differ based on participants’ identities.”
The researchers conducted a series of focus groups with oncologists and nurses, then conducted interviews with 66 cancer patients at an urban and a rural Midwest Cancer Alliance partner clinic as well as an online survey of the public. The main purpose of the research was to explore knowledge and attitudes, beliefs and behaviors relating to cancer clinical trials. Most of the respondents were unaware of such trials as a potential treatment option, while others had heard of them but didn’t understand them.
“Only a small minority could explain what a clinical trial was. But despite this lack of awareness, a good amount of people had a positive attitude towards them,” Erba said.
Nearly 30 percent had a positive perception, but about 25 percent perceived trials as a last resort treatment. Others expressed concern about the trials’ safety or considered taking part as being a “guinea pig,” or they feared the possibility they might receive a placebo.
The majority of respondents said they were most familiar with the term "clinical trial" either through commercial ads for services that offer money to take part in a trial or from television shows such as “House” or “Grey’s Anatomy.” Also, when asked if they had discussed clinical trials with their doctors, only about 25 percent reported they had, even though participants reported highly depending on their doctors as a source of information.
With knowledge of the three main barriers to participation — lack of awareness, media dominating the conversation and lacking information from doctors — the researchers will develop a plan.
“The strategic communication plan we are currently developing will employ messages and distribution channels tailored to each of our two principal audiences – racial minorities living in an urban environment and predominantly white adults living in rural areas of Kansas,” said Mugur Geana, principal investigator of the study and director of the Health Communication Research Shared Resource of the KU Cancer Center. “In addition to the mass communication efforts we plan to actively engage oncologists and provide them with dedicated informational tools and training to make easier their discussion with patients about participating in cancer clinical trials. We plan to use what we will be learning from this pilot test to expand the most successful interventions to all partner clinics of the Midwest Cancer Alliance. Our goal is to make the option of participating in a cancer clinical trials an absolutely routine discussion that every cancer patient should have with their doctor.”
Although only very few of those interviewed ever participated in a clinical trial, there was a level of altruism and willingness to do good that was a common denominator among those contributing to the study.
“The participants overwhelmingly said they need to hear that a trial can help others, especially if it is framed in a way that helps them know they can help future generations, including their own families,” Erba said.
The findings from the initial stages of the study have been accepted for presentation at the International Communication Association conference in May in Fukuoka, Japan. Researchers will evaluate the plan’s effectiveness once it is in place.
The project will ultimately help achieve more effective treatment options for all, especially populations that have not had the opportunity to take part in cancer clinical trials in the past.
“Research is increasingly focused on personalized medicine, thus we need to ensure that research participants represent our diverse populations,” said Dr. Gary Doolittle, professor of medical oncology at KU Medical Center. “As a matter of health equity, all individuals should be provided the same options for health care, including access to clinical trials. Research has shown that racial and ethnic minority populations are just as likely to participate in clinical trials if they are offered the trial as an option.”