Patient involvement in research: an audit of study feedback to participants

Abstract

The growing importance of involving volunteers and the wider community in research is well recognized. Participants are no longer mere “subjects” but are active partners in the research process, and for these engagements to be successful, effective communication is vital. Researchers are well practiced at disseminating their findings to the wider scientific community, but what are the gold standards when disclosing results, both individual and aggregate, to study participants? Shalowitz and Miller (2008a) emphasize the need to offer research results as an “appropriate and obligatory expression of respect for persons,” and the implications of receiving results have been widely examined (Shalowitz and Miller, 2008b; Fernandez et al., 2004). Despite the interest in this area, however, very few studies have looked at dementia research and how best to convey study information and results to participants so as to maximize their involvement and ownership of research. In an attempt to address this gap in the evidence base, we undertook an audit of the views concerning a study newsletter, which had been designed to provide some feedback to those volunteering for the research.