People from lower socioeconomic backgrounds, minority groups, and rural areas are not well-represented in clinical trials and biobanking, which hampers research on health disparities. Patients in these subgroups are willing to enroll in clinical trials, but they are often not asked to participate, and neither they nor their healthcare providers are well-informed about this important research.
These were the findings of a pilot study of patients and providers from Louisiana communities presented at the 2018 American Association for Cancer Research (AACR) meeting. Of concern is that study participants, including healthcare providers, did not know where to get more information on clinical trials and biobanking.
“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 investigator Terry C. Davis, PhD, Director, Health Literacy Core, Louisiana Clinical and Translational Science Center, Baton Rouge.
“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.
Ignorance of Clinical Trials
Almost all the healthcare providers included in the study were interested in clinical trials and biobanking, but they didn’t know where to find information about them. Most patients in the study were willing to participate, but had never been asked.
Healthcare providers suggested brief, plain handouts with talking points that they could share with their patients, as well as a contact person who they could reach out to for more information, as effective ways to increase participation.
Patients want their information from a “trusted” source, such as their general practitioner. Few participants in the study 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,” Dr Davis stated. “We need accessible, honest, transparent, actionable materials and a new vocabulary,” she said.
Specific examples of problematic vocabulary include “clinical trial,” which should be replaced with “studies,” and biobanking, which should be referred to as “your tissue or blood will be stored in a bank for further research.” In addition, the word “genomics” is not well-understood.
Knowledge Gap
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 incomes. The 25 safety-net healthcare providers who participated included 10 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,” Dr Davis noted.
She said that her current study was a pilot study in 1 state, and that a larger study that includes people from even more diverse communities is needed to strengthen these conclusions.
Common Barriers
Dr Davis pointed out that transportation is a barrier for many of these underserved populations, and she 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, MA, President, City of Hope National Medical Center, Duarte, CA. “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.”