People from lower socioeconomic backgrounds, minority groups, and rural areas are not well represented in clinical trials and biobanking, hampering research on health disparities. It turns out that people in these groups would be willing to enroll in clinical trials and biobanking but are not asked to participate. Importantly, neither they nor their healthcare providers are well informed about this important research.
These were the findings of a pilot study of patients and healthcare providers from Louisiana communities presented during a media preview for the 2018 Annual Meeting of the American Association for Cancer Research (AACR). Of concern is that study participants, including healthcare providers, did not know where to get more information.
“Adults from communities that experience cancer health disparities, such as racial and ethnic minority groups, those with low socioeconomic status, and those who live in rural areas, are underrepresented in clinical trials and biobanks,” said lead author Terry C. Davis, PhD, professor at Louisiana State University Health Sciences Center in Shreveport and at the Feist-Weiller Cancer Center, and director of the Health Literacy Core of the Louisiana Clinical & Translational Science Center. “This issue must be addressed if we are to ensure that new treatments are available and effective for patients in all segments of the population,” she added.
Almost all the healthcare providers included in the study were interested in clinical trials and biobanking but didn’t know where to find information. Most patients were willing to participate but had never been asked.
Healthcare providers suggested brief, plain handouts with talking points they could share with patients plus a contact person for more information as effective ways to increase participation. Patients wanted their information from a “trusted” source, such as their general practitioner. Few participants in the trial said that they would look to the Internet or social media for information about clinical trials and biobanking.
“There is a widening communication gap in precision medicine and biobanking between researchers and community providers, patients, and the public,” she stated. “We need accessible, honest, transparent, actionable materials, and a new vocabulary.”
Specific examples of problematic vocabulary are “clinical trials” (should be replaced by “studies”) and “biobanking” (should be “your tissue or blood will be stored in a bank for further research”); also, the word “genomics” was not well understood.
The study was based on 14 focus groups and 7 individual interviews from January 2017 to May 2017 in urban and rural communities in Louisiana. Among the 78 patient and community participants, 78% were African American, 24% were from rural communities, and 70% reported low income. Among the 25 safety net healthcare providers who participated, 10 were physicians, 7 clinical research associates, 5 nurse practitioners, and 3 behavioral health professionals.
“Outside of this study, I have noticed a knowledge gap among healthcare providers. Less than 10% of the audience at 2 medical schools where I spoke recently raised their hands to indicate that they were aware of clinical trials and biobanking,” she noted.
Dr Davis said that her current study was a pilot study in 1 state, and a larger study including people from even more diverse communities would be needed to strengthen these conclusions.
Also, she said that transportation is a barrier for many of these underserved populations and suggested mobile health vans as a means of improving communication and participation in clinical trials and biobanking.
“This is a simple issue, but the barriers are complex,” said AACR President Michael Caligiuri, MD. “A shocking statistic is that the death rate of all cancers combined is 25% higher for African Americans than whites. This study points to some of the problems involved in this disparity.”