Written by: Sharon Carothers; Managing Director; Sensis Health
Medical research and clinical trials lack African, Asian, and Hispanic American participants, as well as participants who are 50 years old or older. This makes it harder to determine if discoveries will be effective among these unrepresented populations. Recruiting these groups is notoriously complex, and, unfortunately, many investigators, contract research organizations, and drug and device makers still fail to do so effectively.
As a multicultural health care communications expert, Sensis set out to answer: What would encourage underrepresented audiences to participate in medical research or clinical trials?
To answer this question, Sensis conducted an online survey of 1,727 adults ages 18 and older (for more information, please visit https://www.sensisagency.com/diversity-medical-research). We summarize what we learned, below.
Findings: What would encourage these audiences to participate?
For Hispanic Americans, recruit respondents who would benefit from these trials.
We asked respondents how likely they would be to volunteer for a medical research study and how likely they would be to volunteer for a medical research study if it was related to their health condition(s). Hispanic Americans were significantly more likely to participate when asked the latter, suggesting that they may overcome their reluctance if recruited per their health conditions.
Note: African Americans also expressed more interest if the research was related to their health conditions, though this greater interest was not quite statistically significant.
For African Americans, state how research will benefit their community.
We also asked respondents to rate how interested they would be in participating in medical research that would benefit their ethnic community. African Americans were by far the most interested in this approach, making up 30% of respondents who found this very appealing. African Americans also had significantly higher responses to this question than any other subgroup (62%). These results suggest that communicating how the research would help African Americans specifically would be an effective way to secure buy-in from this important population.
For older adults, maintain relationships and state the research’s aims.
Older adults said they would be more willing to participate in a medical research study if the study coordinators would maintain relationship with participants post-study (i.e., provide updates on study, follow up with participants to see if any adverse side-effects have occurred after the trial period, offer resources and support for their health).
Respondents 50 years old and older also expressed a greater interest in helping researchers find medical advancements or cures. 11% of adults older than 50 reported this, compared to just 6% of adults younger than 50, a significant difference.
For all audiences, provide incentives.
Most respondents expressed an interest in increased compensation (but given the limited budgets of many trials, we recognize this will not always be the most feasible recommendation to incorporate).
For all audiences, provide assurances.
Respondents stated that greater protections, or assurances that they would be cared for should they experience adverse side-effects after the clinical trial has ended, would encourage them to take part.
For all audiences, provide transparency.
This was especially true for older adults, with 47% of respondents older than 50 years old recommending this, compared to only 39% of other respondents, a significant difference.
Respondents also reported that more transparency about who is conducting the study (e.g., private corporations, pharmaceutical companies, government) would increase their willingness to participate in medical research.
Finally, define what medical research is and what it entails, especially for those who have never participated before.
Before we asked respondents to rate their general impression of medical research or clinical trials, or if they had participated in either, we asked them to describe these activities in their own words via an open-ended question: What do you know about “medical research studies” and “clinical trials”? What do you think is their purpose? Please be as detailed as possible. Doing so provided us with a measure of unaided awareness, allowing us to qualify how familiar respondents were with each before we introduced and defined those concepts to them later in the survey.
We found that 22% of respondents who had never participated in medical research or clinical trials did not even know what medical research or clinical trials were. To boost participation, study coordinators should explain what medical research and clinical trials are generally, as well as describe what their specific study is attempting to accomplish and for whom. The marketing materials and communications (bus ads, posters, video ads, postcards, etc.) coordinators use to recruit participants should also reflect this information. Providing these important details will go a long way in gaining respondents’ trust and cooperation and boosting the representation among participants in medical research and clinical trials.