T-18: Understanding the Decision-Making Process for Clinical Trial Volunteers: Using Data to Shape Better Experiences
Jasmine Elizabeth Benger
Research Services Director
CISCRP United States
• Understand the decision-making process to join a clinical trial from a patient’s perspective
• Know what elements of clinical trial participation matter most to study volunteers
A bi-annual global survey was disseminated online between May and July of 2017. Anyone who had access to the internet and was over 18 years old was eligible to take the survey, and a total of 12,427 people from various countries in Europe, U.S.A, Asia, Africa, and Latin America responded.
A total of 12,427 respondents completed the survey, with 59% female and 40% male. Those who had never participated in a clinical trial made up 82% of the respondents, and 56% of all respondents were over 55 years of age. Forty six (46%) of the respondents were from North America, 28% of respondents were from Europe, 14% were from the Asia-Pacific region, 5% were from Africa, and 7% were from South America. Eighty eight (88%) of the respondents identified as Non-Hispanic, 81% reported being White, 6% Black or African American, 5% Asian, and 8% reported being Hispanic. The survey helped us understand current patient experiences and preferences around the decision-making process when considering participation in a clinical trial, as the following bullet-points show:
-The majority (84%) of the public feels it is important to be aware of studies being conducted in local communities. Notably, an even larger proportion (95%) indicates it is also important for their regular doctor to be aware of studies
- The majority (58%) would begin their search by asking their doctor. Online clinical trial registries (40%) and general search engines (30%) are also popular starting options. - Many (74%) express interest in discussing and soliciting advice on clinical trial participation from an online peer community. This is particularly appealing to younger people.
- Despite a high comfort level identifying studies together with their doctor, few (10% among those who have never participated) have actually been asked to participate in a study in general and even less have been asked by their doctor specifically.
-Close to 90% of the public believes it is valuable for their regular doctor to present clinical research study options during their visit. And almost all (90%) feel comfortable discussing clinical research study options they discovered with their doctor.
Based on the findings from the 2017 Perceptions and Insights Global Survey, it is evident that patients value their own doctor’s knowledge of available and appropriate clinical trials for them to participate in, and are more likely to consider participation in a clinical trial as a treatment option if their doctor encourages their participation.
However, despite a high comfort level identifying studies together with their doctor, few (10% among those who have never participated) have actually been asked to participate in a study in general and even less have been asked by their doctor specifically. This discrepancy between patient preferences and actual resources available to them to learn about clinical trials highlights a potential area of improvement that could help increase awareness about clinical research.
More educational resources and materials could be provided to doctors about clinical research and sponsor companies could seize this opportunity to support prospective study volunteers. Raising awareness among trusted sources such as doctors not only will help patients learn about clinical trials that are a good fit for them, but will also help them make more confident decisions.