Survey: Minorities underrepresented in clinical trials, but want to participate
Racial and ethnic minorities, as well as individuals with low socioeconomic status, appeared open to participating in clinical trials, but their health care providers reported needing more information before recommending participation, according to a study scheduled for presentation at the American Association for Cancer Research Annual Meeting.
“This is really important because disparities exist in recruitment, retention and trust in clinical trials and biorepositories particularly among adults with low socioeconomic status, racial and ethnic minority groups and those who live in rural areas,” Terry C. Davis, PhD, professor of medicine and pediatrics at Louisiana State University Health Sciences Center and Feist-Weiller Cancer Center, said during a press conference. “Despite all of this cutting edge, very exciting, wonderful research, [fewer] than 5% of cancer patients are currently enrolled in a clinical trial and [fewer] than 10% of these people are minorities. We must have diverse participation to identify how specific drugs and treatments are most useful for different people.”
Davis and colleagues conducted 14 focus groups and seven individual interviews from January to May 2017 in urban and rural communities in Louisiana to assess the barriers that kept people from participating in clinical trials.
The analysis included 78 patient and community participants (age range, 45 to 88 years). The majority were women (85%), black (78%) and reported having lower income (70%). Approximately one-quarter (24%) lived in rural communities.
The participating health care providers included physicians (n = 10), clinical research associates (n = 7), nurse practitioners (n = 5) and behavioral health professionals (n = 3).
Low-income and minority patients expressed interest in participating in genomic trials and biobanking, even if it would not benefit them directly. Patients with cancer appeared highly interested in participating in clinical trials that could benefit them. Community participants trusted clinical trials less than patients.
Several statements led patients to feel scared, confused or distrusting, including “clinical trials and biobanking;” survey respondents preferred the language “medical studies and a bank to store blood and tissue.”
Black study participants responded that recruitment messages should state that “all people are needed for studies to improve treatments” rather than “African-Americans have been underrepresented and most treatments are based on whites.”
Additionally, respondents also expressed concern about who would be able to see the participants’ data.
“People basically wanted to know, ‘What are you going to do with my blood sample? Where’s it going to be? Where is the bank? How much information about me are you going to keep? What is it going to be used for?’” Davis said.
Television aided survey participants knowledge of clinical trials and personalized medicine; however, no participants used the internet or social media to look for clinical trials.
All participants said information about clinical trials and biobanking would be most effective and actionable if it came from their physician.
All surveyed health care providers expressed interest in being more involved in clinical trials, but they reported lacking time to understand and recommend trials to their patients.
Clinicians expressed a desire for brief handouts about trials with talking points and information for patients.
Researchers acknowledged the small number of participants from one geographic location as a study limitation.
“Information needs to be easy to get your hands on and it needs to be honest and transparent. It needs to be easy to understand,” Davis said. “Content and dissemination of plain language biobanking information, I believe, needs the input of the public, safety-net patients and community providers.”– by Cassie Homer
Davis TC, et al. Abstract 3010. Scheduled for presentation at: American Association for Cancer Research Annual Meeting; April 14-18, 2018; Chicago.
Disclosure: Davis reports no relevant financial disclosures. Please see the abstract for all other authors’ relevant financial disclosures.