One of the reasons the topic of trial disclosure is fascinating at the moment is that its story is not yet written. In the most recent 12 months, the EMA has faced lawsuits for new trial transparency guidelines, the FDA has submitted a new draft on trial protocol for public feedback, and AllTrials has launched a campaign to publicize patient data in the EU. It’s not clear exactly which private organizations stand on which side of the debate, or even which sectors of the industry will see the most impact from what comes. Perhaps the only certainty is that we are in the middle of the trial transparency story, and every biopharmaceutical professional has the opportunity to influence how it unfolds.
The reason I bring this up is because we at BrackenData recently conducted a survey to gauge the industry’s attitudes towards trial disclosure. We asked people about the affects disclosing trial data has on patients. We asked about the affects trial disclosure may have on the industry. We even asked about the concern for trial data quality in different markets around the globe. What we found is that there is widespread support from all types of clinical trial professionals to disclose more data.
The statistic that best encompasses this support, as you may have guessed from the title, is that over 84% of our survey respondents agree that trial disclosure will improve healthcare. Of those, 87% agreed that disclosing trial data can save patient lives and that “subjects in a trial should be given their results and the results of the trial after the product is approved”.
84% is an interesting number; it quantifies how our industry feels. But implying so much from a single question in a small survey isn’t that interesting. What’s more interesting here is what this means during such a pivotal time for the biopharma industry – a time where feelings and opinions are finding their place in a field of science, and lawsuits trump regulation. These statistics help tell the trial disclosure story. There is a quote particularly relevant to this concept:
“99% of statistics only tell 49% of the story” – Ron DeLegge II, Gents With No Cents
We are gauging at this time, in March 2016, how professionals feel about trial disclosure. I can tell you that a majority of the industry thinks that sharing data will save lives. But how does this compare to how professionals will feel in March 2017? How does this affect what new regulations the FDA and EMA publish in the coming 12 months? I don’t have a prediction for these questions, but I do know this: we only know 49% or less of the story. If you have a stance on the matter, influence how the rest of this story is written. If you are pro-disclosure, hire results-sharing services or take action that promotes trial transparency. If you are on the other side of the fence, aim to prove the 81% wrong.
I look forward to sharing more data from our survey in future blog posts. In the coming months it will be interesting to see how the opinions we gathered compare to the action that takes place. When possible, we at EveryClinicalTrial will share statistics with you on the issues. But we won’t forget that they only tell 49% of the story. Join us in discussion and action as we watch the other 51% unfold.