If you were asked to name at least one specific clinical trial and what the basic outcome of the trial was, would you be able to answer?
I considered this question for a few minutes, and the most relevant thing I could retrieve from my memory was a scene from the 1990 Robert De Niro and Robin Williams movie Awakenings, in which Robin Williams performs trials on a group of long-term catatonic patients in an attempt to “awaken” them from their states. The result of the experiments is that the patients are freed briefly from their catatonic states, and although they eventually relapse, the protagonist’s life is meaningfully changed. Though it is a dramatic story from the realm of entertainment, it is a good example of a positive portrayal of clinical trials.
(http://moviereviewwarehouse.files.wordpress.com/2012/01/awakenings1.jpg)
This one example, however, is the only instance I could produce.
I suspect the result for the average American is probably similar. One could argue that the question is not practical and that it is akin to asking someone to recall the abstract of an article from a scientific journal, but how can someone volunteer themselves for something that they cannot link positive outcomes towards? Many actually have a negative perception of clinical trials. The Center for Infomation & Study on Clinical Research Participation (CISCRP) conducted a survey in 2006 on 900 US adults and found that the public’s perception of clinical trials is that they are for patients that are “very sick without any other options”, or that they are “looking to make money” (http://www.ciscrp.org/professional/facts_pat.html). Furthermore, 34% of Americans said that they “Do Not Admire” people who volunteer for clinical trials.
But why are clinical trials viewed so negatively? Should they not be something that is valorized, much like blood or organ donations are? As clinical trials are a driving force behind innovation in treatment, especially in oncology, it must be that the uncertainty and lack of information about clinical trials is powerful enough to overcome its positive features. A possible solution is to make the results of clinical trials publicly accessible. Over half of the respondents to a survey conducted by CISCRP in 2005 said that “they would have greater trust in clinical research if the results were made available on a public website registry” (http://www.ciscrp.org/professional/facts_pat.html). Since 2005 there have been advances in this area, such as the release of results by ClinicalTrials.gov, but there is still an abysmally low rate of 2-7% accrual for adult cancer patients (Thompson, Social Media in Clinical Trials).
In order to explore the state of clinical trial visibility online, I decided to check ClinicalTrials.gov. Searching “testicular cancer texas”, I looked for studies marked as “Completed”, and found that it is not easy to see clear, positive results from the trials. In fact, for all of the completed studies in my search results, none of them had published results. In addition, I imagine that the descriptions of the studies would not be easily processed by the average person because they use much scientific, medical, and other technical language. Although precise language is a prerequisite for scientific research, could there not be a way to make this information easier to digest for a casual visitor? If such a source existed, then maybe the question posed at the beginning would have been easier to answer.
