Survey results provide current and highly informative messages
SURVEY RESULTS PROVIDE CURRENT AND HIGHLY INFORMATIVE MESSAGES
Over 900 patients participated in the study, providing a base of information on clinical trial behavior, attitudes, needs and demographics. Their views provide key insights into public perception of clinical trials, based on both retrospective experiences and potential future participation.
1. TRIAL PARTICIPATION IS MOST FREQUENTLY A RESULT OF PHYSICIAN REFERRALS
Almost half of all participants sourced their clinical trial through this channel — eclipsing all other sources by some margin — and emerging as more than twice the proportion who had used ClinicalTrials.gov.
2. CLINICALTRIALS.GOV HAD NOT BEEN USED BY ABOUT 3 IN EVERY 4 TRIAL PARTICIPANTS
Use of this resource was particularly low among those aged 65+. However, when usage was evident, it was highly rated — attaining an average score of 4.1 out of a maximum score of 5, contrary to other findings on ClinicalTrials.gov usage. This rating suggests that the website is performing well, but with room for improvements.
3. A MAJORITY OF TRIAL PARTICIPANTS RATE THE ENROLLMENT PROCESS HIGHLY
Two-thirds move from pre-screening to enrollment within a week, with this speediness yielding an average rating of 4.2 out of a maximum score of 5. An impressive 80% viewed the process positively, suggesting that the mechanisms of screening and subsequently enrolling are working with efficiency and effectiveness.
4. COMMUNICATION IS WELL-PITCHED
86% of trial participants felt that the level of communication they received during their trial was sufficient. This was typically around the once-a-week mark, a frequency eliciting the very highest levels of satisfaction, and one which suggests that — in the minds of participants — this is the most desirable level of communication during trials.
5. RECEIVING TRIAL RESULTS IS CLEARLY SEEN AS IMPORTANT
However, over 60% of clinical trial participants had NOT received the results of the study in which they participated. This was a figure clearly at odds with the expectations of a majority of both trial participants and non-participants. Here, the message was very much along the lines of "if we participate in a trial, we would like the results, please." Indeed, a need for more trial feedback emerges as the #1 suggested change to the clinical trial experience.
6. A MAJORITY OF TRIAL PARTICIPANTS WOULD BOTH RECOMMEND AND REPEAT THE PROCESS Over 80% of those who had already participated in a trial — often in the context of a positive overall experience — would happily participate again, and would recommend participation to others. Their rationale is often selfless, with a desire to help others and to assist in the advancement of more effective treatments and cures. Accompanying benefits include financial recompense, additional knowledge and enjoyment, but these are clearly eclipsed by more altruistic intentions.
7. A MINORITY OF NEGATIVE OVERALL EXPERIENCES OF TRIALS DAMAGE PERCEPTIONS OF THE PHARMACEUTICAL INDUSTRY
The message is very much that a poor trial experience worsens views of the industry.
8. BEING UNABLE TO SOURCE RELEVANT TRIALS TYPICALLY PREVENTS PARTICIPATION The most prevalent obstacles to participation are undoubtedly being unable to locate relevant trials which are an appropriate match to both geographical location and/or condition/disease. Accompanying comments from non-participants provided insight into the difficulties experienced by some in sourcing trials — despite a desire to do so.
9. A MAJORITY OF NON-PARTICIPANTS IN EACH DEMOGRAPHIC CATEGORY WERE WILLING TO PARTICIPATE IN A CLINICAL TRIAL
This was a finding particularly emphasized if their physician was making a referral. Over 80% indicated that physician referral would spur their participation — clearly highlighting the power of physicians in driving participation.
10. A DISEASE/PATIENT ADVOCACY GROUP WEBSITE EMERGED AS THE #1 METHOD OF SOURCING CLINICAL TRIALS
Most patients accessed information about clinical trials from advocacy group and disease-specific websites.