A Way For Biopharma To Disclose More Trial Data

The 19th century philosopher Henri-Frederic Ariel said, “The greatest need of all human beings is to be appreciated. And the highest form of appreciation is through one's acts and deeds.” Sadly in clinical research, appreciation for study volunteers who give the profound gift of their participation has historically been neglected. At a time when some regulatory bodies and biopharma companies are increasing their transparency initiatives involving access to clinical-trial data, disclosing trial results to volunteers could also go a long way toward strengthening public confidence.

Study volunteers want to know that their participation mattered and that it is appreciated: whereas 93% of study volunteers in 2011 expressed interest in receiving the results of clinical trials in which they participated, a similarly high percentage (91%) never actually did...

...Failure to responsibly and responsively disclose clinical trial results to the public is a major missed opportunity. Disclosing trial results and improving transparency is the right thing to do not only for patients but also for research professionals. An overwhelming majority of Investigative sites (98%) want to provide trial results to their study volunteers. They feel that it is not only their moral obligation to do so, but also an essential way to strengthen the relationship with their study volunteers and an opportunity to maintain contact with patients who have completed participation. Site staff feels that their patient relationships are compromised when they are unable to provide results....