People actually want to participate in clinical trials, despite the struggles the pharmaceutical industry faces with finding study subjects, a new survey reveals. The survey also highlights the barriers that prevent some from actually doing so.
Why patients want clinical trials
StuffThatWorks, a patient-generated, real-world data platform, developed the Barriers to Clinical Trials survey to get information from over 6,000 people with various chronic conditions, and over 93 percent of respondents shared they’re interested in learning about clinical trials related to their conditions. That could be because 57 percent of respondents’ lives are severely impacted and 43 percent feel like they’ve exhausted all options and think clinical trials may be a last hope. This points to an eagerness, and at times––desperation––for more effective treatment methods. These include physical conditions and even mental illness.
Aside from wanting to find an effective treatment option, patients also reported that they wanted to help advance science. Some also stated that their doctors recommended looking into trials, which initially piqued their interest. Some were also interested in the access and potential compensation for participation.
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What’s keeping patients out of clinical trials
However, barriers got in the way of them enrolling. A major one, according to Julie Ross, president and CEO of Advanced Clinical, is a lack of communication from their doctor. She explains in a statement, “The majority of those individuals knew what clinical trials are all about, and they’re extremely interested, like 93 percent of them are very interested in hearing about clinical trials, and yet it’s not happening. I think we have to start to ask ourselves, why not?”
Among the 6,000 patients, the average age of survey participants was 61, and over 1,200 chronic conditions were represented, including COPD, fibromyalgia, long COVID, tinnitus, and peripheral neuropathy. Many of the conditions have limited treatment options and/or no cures. Yael Elish, founder and CEO of StuffThatWorks says that the survey proves that medical professionals should be open to clinical trials and presenting them to patients. She says in an interview with Applied Clinical Trials, “This unique patient perspective, collected alongside other organized health information, offers valuable insights and underlines a new way for clinicians and researchers to engage with patients to improve study protocols and advance medical science.”
Why this survey was conducted
With the size of the platform, Elish felt motivated to get to the bottom of why many clinical trials lack participation. She recalls, “We decided to dive into this issue of why is it that clinical trials are constantly facing a major problem with recruiting patients by asking patients what the barriers are for participation. We conducted this survey where we have questioned patients across all 1,250 conditions with about 35 questions, and received really amazing, interesting data that I think highlights a lot of what needs to be done in the industry.”
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Aside from not being informed of trials by their doctors, patients pointed out other barriers preventing them from taking advantage of clinical trials. 23 percent of patients expressed that they could not manage travel costs and potentially lost wages. While 41 percent reported that they were stressed about finances, 31 percent of them said that finances were a major factor in decision-making.
The survey was initially conducted for StuffThatWorks’s target market, which is the pharmaceutical industry, and Elish feels that profiling so many conditions and getting feedback from a wide variety of participants will help to encourage more practitioners to get involved and in turn, increase numbers needed to find effective treatments for many misunderstood and/or understudied illnesses.
