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AACR 2018: Underserved Populations Lack Information About Clinical Trials, Biobanking

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Key Points

  • Among the 78 patient and community participants, 78% were African American, 24% lived in rural communities, and 70% reported having lower income. Among the 25 safety-net health-care providers who participated, 10 were physicians, 7 were clinical research associates, 5 were nurse practitioners, and 3 were behavioral health professionals.
  • Overall, almost all of the patient and community participants stated they were open to participating in clinical trials and biobanking. Only two patients—who were both treated at a cancer center—had been asked to participate by their physician.
  • All the health-care providers were interested in learning more about clinical trials and biobanking and wanted closer ties with researchers.

People in Louisiana communities with cancer health disparities would be interested in participating in clinical trials or submitting samples to biobanks if provided information about these opportunities by a trusted physician—but physicians reported lacking appropriate information to give to their constituents, according to data presented during a media preview for the 2018 American Association for Cancer Research (AACR) Annual Meeting, to be held April 14–18 in Chicago.

“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 Terry C. Davis, PhD, Professor of Medicine and Pediatrics 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 all patients in all segments of the population.”

Study Methods and Findings

To learn more about why disparities exist in participation in clinical trials and biobanking, Dr. Davis and colleagues conducted focus groups and interviews with adults from racial and ethnic minority groups, those with low socioeconomic status, and those who live in rural areas. The researchers also interviewed the health-care providers that serve them.

“By talking to adults from populations that are underrepresented in clinical trials, we found that they are open to participating in clinical trials and biobanking, even if it will not benefit them directly, but that they had never been asked to participate and did not know where to learn about participation,” said Dr. Davis. “They all agreed that information would be most effective and actionable if given to them by a trusted physician, but when we talked to health-care providers in their community, they said that they lacked information to discuss with their patients.

“Our results show that participation of populations underrepresented in clinical trials and biobanking could be enhanced by developing working relationships with community clinics because community providers are the conduit to patient participation,” added Dr. Davis. “Structured methods for delivering useful, plain-language information on clinical trials and biobanking need to be created collaboratively with community clinics and the public.”

Dr. Davis and her colleague Connie L. Arnold, PhD, held 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% lived in rural communities, and 70% reported having lower income. Among the 25 safety-net health-care providers who participated, 10 were physicians, 7 were clinical research associates, 5 were nurse practitioners, and 3 were behavioral health professionals.

Overall, almost all of the patient and community participants stated they were open to participating in clinical trials and biobanking. Only two patients—who were both treated at a cancer center—had been asked to participate by their physician.

None of the participants had looked for clinical trials on the Internet or social media. Information on clinical trials and biobanking would be most effective coming from a trusted health-care provider, according to the patient and community participants. No one suggested the Internet would be a useful place to put information.

All the health-care providers were interested in learning more about clinical trials and biobanking and wanted closer ties with researchers. The primary care physicians thought that brief, plain-language handouts with talking points to discuss and share with patients—together with contact information of a person to call to get more information about participation in a trial or biobanking— would be effective ways to increase participation.

Implications and Limitations

“These results highlight a huge communication gap between the cancer research community and potential participants in cancer genomics studies as well as their providers,” said Dr. Davis. “Enhancing communication is a key priority moving forward. Since a trusted provider is essential for enrollment, these trusted providers and their patients need to have access to clear, culturally appropriate, unbiased information on genomics trials, and their potential risks and benefits. This should happen before anyone is asked to participate in a particular study, not during the consent process.”

According to Dr. Davis, a main limitation of the study is that this is a pilot study with a limited number of participants in one state. To strengthen the conclusions of the study, the researchers would need to speak with more people from an even more diverse set of communities, such as additional rural areas and those in Hispanic and non–English-speaking communities, she said.

This study was supported by funds from a pilot grant from the Feist-Weiller Cancer Center and in part by U54 GM104940 from the National Institute of General Medical Sciences of the National Institutes of Health, which funds the Louisiana Clinical and Translational Science Center.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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