Initial experience with a group presentation of study results to research participants

Following the closeout and publication of a randomized clinical trial of saw palmetto for treatment of symptoms of benign prostatic hyperplasia, patients were invited back to the research center to participate in a group presentation of the study results.Approximately 10% of participants attended one of two presentation sessions. Reaction to the experience of the group presentation was very positive among the attendees.A group presentation to research participants is an efficient method of communicating study results to those who desire to be informed and was highly valued by those who attended. Prospectively planning for such presentations and greater scheduling flexibility may result in higher attendance rates.Clinicaltrials.gov #NCT00037154Research participants often wish to know the results of the studies in which they have taken part [1-6]. Though data on this issue are scant, it appears that providing the results of research studies to participants is not typical [5,7,8] leaving many participants, who have born the risks and burdens of the study, without the information they desire.It is unclear why more participants are not informed about the results of their studies. Clearly, some may choose not to know the study findings, as they may feel burdened by the implications of receiving the inferior treatment or that they may be at increased risk for future adverse outcomes [2,5,9]. For those participants who desire to learn the results, other, more practical barriers exist. Results are typically embargoed until publication in the peer-reviewed literature, so considerable time may elapse between the end of the participant-contact phase of a study and the publication of its results [10,11]; interest of participants and of study staff in re-contacting participants may wane over this interval. Perhaps more importantly, one-on-one personal contact between participants and study personnel can be very expensive and time-consuming and, therefore, may be avoided by many i