Survey of 4,000 Patients Reveals How to Increase Diversity in Clinical Research

January 23, 2020

Applied Clinical Trials

Antidote Technologies announced the findings from a recent survey of 4,000 patients and caregivers about their attitudes towards clinical research. The survey was developed and distributed in partnership with Scorr Marketing and eight advocacy organizations: Allergy & Asthma Network, American Kidney Fund, GO2 Foundation for Lung Cancer, Healthline, JDRF, Lupus Research Alliance, Melanoma Research Alliance, and Multiple Sclerosis Association of America. Among the findings in the study was a distinction in the motivation between white individuals and people of color regardless of condition when considering volunteering for research.  

People of color have traditionally been underrepresented in clinical research. Nearly 40% of the population in the United States are racial and ethnic minorities, but estimated rates of research participation for these groups range from 2% to 16%.1,2 For example, Latinos make up 18% of the American population, but just 1% of the clinical trial participant population.2 A lack of trust stemming from historical events such as the Tuskegee Study has been cited as a major barrier to participation. In order to develop drugs that are effective for everyone living with a particular condition, diverse participation in clinical trials is needed. 

The survey revealed several factors that affect the participation of people of color, including trial type preferences, motivations for and barriers to taking part in a clinical trial, and logistical factors. Highlights include: 

  • Trial type: While white individuals were more likely to take part in a trial overall, non-white individuals were more likely to take part in an observational trial (83% vs. 79%).

  • Engagement: Hispanic and non-white individuals were more interested in talking with those responsible for the research than their non-Hispanic, white peers were (83% vs. 74%). And, people of color were also more interested in hearing from peers who have participated in research (77% vs. 73%). 

  • Motivation: The segment of non-white individuals who had taken part in a trial in the past were least likely to say that following their doctor’s recommendation was a major factor in their trial participation (33% vs. 25%).

  • Logistics: Non-white individuals were significantly more interested in home visits than were white individuals (59% vs. 38%). The same was true for Hispanic versus non-Hispanic individuals (62% vs. 40%).

  • Financial incentives: Hispanic and non-white individuals rated financial factors, such as payment, reimbursement, and receipt of free or reduced care, as significantly more important than did their white, non-Hispanic peers.

“I often hear from Antidote’s patient advocacy group partners about the need to even the scales in terms of research diversity,” said Lindsey Wahlstrom-Edwards, Head of Partnerships at Antidote. “These survey findings suggest that catering study design, outreach approach, and logistical support to specific populations will reduce barriers to participation, resulting in drugs that are effective for all those in need. This is especially critical in conditions that disproportionately affect communities of color, like lupus, asthma, diabetes, and Alzheimer’s.”

References

U.S. Census Bureau QuickFacts: United States. (2018, July 1). Retrieved November 20, 2019, fromhttps://www.census.gov/quickfacts/fact/table/US/PST045218.

DeArment, A. MedCityNews. (2019, July 8). As precision medicine grows, so does the importance of clinical trial diversity. Retrieved November 20, 2019, from https://medcitynews.com/2019/07/as-precision-medicine-grows-so-does-the-importance-of-clinical-trial-diversity/.

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