Public Perceptions of Clinical Trials: A Comprehensive Survey
The clinical research industry is only becoming more complex and competitive as organizations are inundated with multiple trials and tight deadlines. The clinical trial process is both expensive and time-consuming, and ends more often in failure than success. Less than 12% of drugs and therapies entering clinical testing make it to approval. From start to finish, the clinical development phase takes an average of six to seven years.
On top of that, patient recruitment is a consistent challenge. As sites and sponsors look to create effective and robust participant experiences, they must evaluate and understand the existing perceptions.
Advarra surveyed 1,000 random U.S. residents to gain their general perception and understanding of clinical research.
Participation in Clinical Trials
Survey respondents were asked about their general understanding of clinical trials and the purpose they serve. In total, 82.8% of respondents reported they know what clinical trials are. However, even with a general understanding of trials, it didn’t translate to people actually participating in them. While 69.7% of participants indicated they’ve considered participating in a clinical trial, only 13.4% have reported actually taking part in one. How can we fill the gap?
Perhaps the first place to start is ensuring potential participants have a comprehensive understanding of what a clinical trial entails. In our survey, 53% of respondents said they would be motivated to participate if they had a good level of understanding of the research. Not only does this help participants understand what to expect, having a conversation about the trial enables them to ask questions. About 70% of survey respondents indicated they wouldn’t participate in a clinical trial because of a fear of side effects. Having a conversation about what these look like, and their likelihood, may make all the difference to someone on the fence about participating.
However, that’s not the only motivator to consider. Participating in a clinical trial can take significant time out of someone’s schedule, and at times, can cause them to lose money by taking time off their jobs to come into a clinic. Financial compensation was listed as a participation motivator by 68% of survey respondents.
Even though providing compensation is one way to recognize the time and effort it takes to be a part of a clinical trial, making it more convenient for people to participate also helps. More than one-third – 38% – of participants said the time commitment required of them was reason enough to not participate. Trying different trial types may be one way to engage with future participants. Of the various formats of clinical trials, respondents indicated their willingness to participate in the following formats:
- 19% indicated on-site trials
- 19% indicated hybrid trials
- 34% indicated virtual trials
Healthcare Provider’s Role
While healthcare providers aren’t directly involved in clinical research, their role in the process is pivotal to success. They have the unique vantage point of understanding their patient’s overall health, but are lacking the proper knowledge of knowing when to point people to clinical trials. When asked, 80% of respondents said their healthcare provider has never presented a clinical trial participation option. How can we improve that statistic?
It comes down to communication from every angle. About 56% of respondents said increased communication about available trials as a treatment option in the patient room to raise awareness can help them understand next steps. This, of course, starts with the provider’s relationship to principal investigators (PIs) and study staff. The more communication happening at this level, the better equipped providers can be to present accurate and timely information to their patients.
Communication between healthcare providers and study staff also helps providers understand the risks and benefits of participating in a trial – which 57% of survey respondents said improved patient education about the risks and benefits of participation would help them make a more informed decision. Giving a comprehensive view of what a trial will look like from every potential angle can help patients make a more informed decision. It can also help lessen the likelihood of respondents not participating due to side effects, as previously indicated.
Perception of a Clinical Trial’s Impact
Improving upon trial participation also leaves the door open to improving the perception of a clinical trial’s impact. About half – 53% – of respondents reported thinking clinical trials have the potential to positively impact the world. However, there’s one caveat: if these trials are executed well. While there are things trial staff can do to increase participation and improve relationships amongst healthcare providers, there is work to be done to improve the public’s perception of clinical trials.
Enhancing Public Education and Awareness
Study staff can develop a comprehensive public education program designed to demystify clinical trials. This can include an explanation of benefits and risks, while addressing common misconceptions. Then, study staff can work with healthcare providers to disseminate this information to patients and the general public.
Facilitating Patient-centric Trials
Designing and implementing patient-centric trials focusing on the needs and preferences of participants is another way to boost positive perception. This can involve flexible trial designs like hybrid and virtual trials, which a significant percentage of respondents indicated they prefer.
Sources of Information on Clinical Trials
We are constantly inundated with information – and this is no different when it comes to clinical trial options. When asked, 70% of respondents reported receiving information about health-related topics from their healthcare providers. Additionally, 45% and 36% of respondents indicated they receive information about clinical trials from social media and news media, respectively.
Even though respondents are receiving information from sources as reputable as their own healthcare providers, there’s still a lack of trust between various racial/ethnic groups and the clinical research community, including:
- 39% of Black respondents
- 38% of Asian respondents
- 36% of Hispanic and Latino respondents
- 26% of white respondents
Moreover, minority respondents were up to 50% less likely to trust their healthcare provider in regard to a clinical research study.
How can the research industry work to build more trust amongst these groups? In order to effectively target minority groups, organizations may want to partner with community leaders, create culturally appropriate materials when recruiting for trials, and actively promote diversity in clinical trial staff. Having diverse backgrounds on staff will show your organization walks the walk when it comes to taking diversity seriously, and can help keep participants at ease as they come in for appointments.
However, there are other disparities to address beyond representation in clinics, many of which are longstanding challenges rooted in racism. Addressing systemic issues involving the quality of care received should improve trust and, eventually, encourage greater participation in research.
With an understanding of current public perception, this positions the clinical research industry to properly respond, improve their processes, and work toward increasing participation in studies. Ultimately, clinical trials are only as strong as the number of participants in any given study, and can only benefit the backgrounds actively participating. By working to improve participation and diversity in research, it will advance the future of medicine.