Former US Food and Drug Administration (FDA) Commissioner Robert Califf dubbed 2016 “the year of diversity in clinical trials.”
This year, Research!America and the Association of Clinical Research Organizations (ACRO) polled African-Americans, Hispanics, Asians, and non-Hispanic whites on the various barriers to clinical trial participation. The survey was conducted by Zogby Analytics.
The findings indicate that lack of trust has become less of a barrier to clinical trial participation, said Suzanne Ffolkes, VP of communications at Research!America. Specifically, compared to a previous survey conducted in 2013, lack of trust as a reason to not participate in clinical trials declined by approximately 15% - though more work needs to be done, said Ffolkes.
“Clinical trial participation has remained stubbornly low for decades across all segments of the population,” she told Outsourcing-Pharma.com.
“Understanding the perspectives of minority groups, who have cited trust and lack of awareness as important factors for participation in previous surveys, is critical to address ongoing challenges with recruitment."
According to the survey, 81% of people would be likely to participate in a clinical trial if it was recommended by their doctor and the majority (86%) believe doctors should discuss clinical trials with patients as part of their standard care.
However, less than 20% of the survey respondents said their doctor has talked to them about participating in a clinical trial.
“The message and the messenger influence enrollment in communities where information about clinical trials is scarce and access to health care is a challenge,” explained Ffolkes.
“Strong majorities across all populations said that they would likely participate in a clinical trial if their doctor found and recommended one, but most say they hear about clinical trials on the internet.”
As Ffolkes explained, lack of information is consistently reported as a reason why minorities don’t participate in clinical trials, and this has remained relatively unchanged since 2013.
“Moving forward, we must develop incentives to facilitate more discussions about clinical trials between health care professionals and patients,” she said.
Trust and technology
According to the survey, more people are willing to share personal health information, with 82% saying they would share information such as medical records – and 72% said they would be willing to use technology to share this data.
“More minorities say use of wearable health devices, mobile apps and technology to record their data would be an important factor in their decision to participate compared to non-Hispanic whites, a sign that such tools could help remove barriers to clinical trial engagement,” Ffolkes explained – though all groups cited privacy and confidentiality issues as important decision-making factors.
“What’s encouraging about the results is that patients appear to be willing to play a more active role in medical research,” said Ffolkes. In fact, the study found three-quarters of the respondents feel that clinical trial participation is as important to public health as giving blood.
“A plurality of African-Americans, Hispanics and Asians agree that clinical trial participation should be a routine health behavior, whether you are healthy or ill, similar to getting an annual checkup with your health care provider,” said Ffolkes.
“It is rewarding to see the results of this report regarding the positive public perception to clinical trials, willingness to participate in trials and the increase in the percentage of the public willing to share their personal health information," Bioclinica President and CEO John Hubbard, PhD told us. "This trend should ultimately lead to improvements across the healthcare ecosystem.”
However, more people are less positive about the level of health care services they receive. When asked if such service is based on “the best and most recent research available,” 46% of African-Americans (18% increase), 45% of Hispanics (14% increase), 40% of non-Hispanic whites (7% increase), and 38% of Asians (8% increase) – all said “no.”
In this same vein, more minorities said the industry is not making enough progress in medical research.
Boosting diversity
The 21st Century Cures Act directs the National Institutes of Health (NIH) to increase inclusion of underrepresented populations in clinical trials – which Ffolkes said is a step in the right direction to boost diversity in clinical trials.
“The public and private sector must continue to make strides in recruitment to ensure all populations have access to opportunities to enroll in clinical trials,” she said.
As per the private sector, several companies have launched programs to partner with community health clinics and other providers in addition to educating physicians. “Such information enables us to measure progress in efforts to increase diversity in trials and address barriers that will continue to have an impact on medical progress,” said Ffolkes.