Why are patients reluctant to participate in clinical trials? How might they be encouraged to do so? We posed these questions to R’Kes Starling, founder and CEO of Reveles Clinical Services, a clinical research solutions company committed to expanding the population of people who are able to participate in clinical trials by removing barriers that prevent them.
Have you seen patient reluctance to participate in clinical trials?
Patients in general are becoming more engaged and empowered about their health. They are more interested in managing their health. As a result, we are seeing that many patients are more likely to participate in clinical trials; however, many of them just don’t know how.
So you see a lack of awareness more than a reluctance?
There was an article a few years ago entitled “Why Are Health Studies So White?” The point was that if you look at the demographics for trial participants, they’re typically middle-aged white men who have graduate degrees and make $100K. These are well-educated people. They have great access to information. They have a level of sophistication and acuity about navigating the process. So that’s who shows up.
It sounds like fundamentally what you’re talking about is a problem of education and communication.
Of course there are other barriers as well, including matters of trust, cultural factors, and the overall cost of the commitment to engage in a clinical trial.
What should we say to people to educate and encourage them?
It’s important to remind people that without willing participants to play a role in the advancement of medical innovation, healthcare would not be where it is today. So many valuable innovations and treatments—from penicillin to immunotherapies for cancer—have resulted from clinical research. Diagnostics and medical devices as well, stents and pacemakers.
Think of the burden on society if we did not have these innovations.
Do you find a significant difference in the reasons people are reluctant to participate in clinical trials based on their ethnicity, race, or socioeconomic status?
I think the reasons patients consider clinical trials are highly personal.
Meaning it’s not appropriate to talk about them as a group, like “Black Americans”?
Right. It’s highly personal to the individual, their disease state, their interests. There are some very meaningful cultural considerations. For example, members of Native American and Alaskan American communities are culturally not inclined to seek out interventions, so they may say that participation in a clinical trial just doesn’t align with their beliefs.
When people do participate, what is generally their reason?
One of the reasons frequently given is a general interest in helping to increase the knowledge and understanding of certain disease manifestations, to help identify new pathways to treatment, or a cure. It’s something that they are paying forward. Of course another reason is that a clinical trial is a last resort for some patients. As one patient with a rare disease said, “Hope means so much more when it’s all you have.”
What might be ways to grow or encourage participation when the stakes aren’t so high?
First, I want to acknowledge that in our industry, this issue is front and center. We all benefit from increasing the overall awareness of, and participation in, clinical trials. When people don’t participate, it can become a population health issue. When certain populations are not represented in the data, the data is not complete.
While I think that, as an industry, we are doing an okay job, we could definitely do better. We need more community outreach, more awareness programs, more effective digital marketing. We life sciences and clinical development professionals should be talking more about the work that we do and why it’s important to have people participate in clinical research. Fortunately, there are organizations doing great work in helping to build awareness, demystify, and develop the resources and tools that can create change.