If we look at statistics on the leaking patient pipeline in clinical trial recruitment and enrollment over the past 15 years, we find that the loss of patients was somewhat stable. The rate of lost patients is over 60% for pre-screening, over 30% for screening and 20% for post randomization. One rate has worsened dramatically: the percent of patients who declined consent has increased from approximately 40% to over 60%1.
One factor is the abundance of contradictory information to be found on the Internet concerning indications, treatments, and trials, and this is completely unsatisfactory for investigators.
There is need for a community platform for trial participants which offers well-vetted and targeted information to trial candidates already during pre-screening, and especially during the consent process. Patients with an account on this community platform will go home after the ICF talk with the investigator and have the chance to plunge into the matter with information suitable for lay persons. Most importantly, they can better include family and friends into the decision to give consent and participate in the trial.
Communication outside well-trodden paths on a reliable and user friendly platform where patients don’t struggle to find their way is the lever the increase number of consenting patients. This is an opportunity to quickly and effectively staunch one painful leak in the pipeline.