Grant: Project Grant

Participation in clinical research is an essential element of improving healthcare. Any change in treatment or management should be tested before it is put into practice, and this requires patients (and others) to participate in research, usually on a volunteer basis. Despite its importance, research participation is consistently low across almost all diseases and geographical regions. The costs of low participation are many and varied, including wasted money and other resources, inability to use those resources for other purposes, delayed new treatments, faulty findings, and unnecessary risks to those who do participate. While many studies have explored this problem, they have not been informed by theories from psychology that contain considerable knowledge about how to help people make difficult decisions, and how people change their behaviour. The overall goal for this project is to develop the knowledge and tools necessary to help patient groups, researchers, and trial sponsors optimize both the rate of participation and the experience of clinical trial recruitment. The work will proceed in four phases, including (1) reviewing the scientific literature to understand how recruitment is currently done from a theoretical perspective; (2) interviewing the range of different groups with expertise in these issues (e.g. participants, physicians, trial recruiters, and experts in the infrastructure underlying clinical research); (3) developing tools to help optimize trial recruitment (e.g. standard surveys that can identify problems before a trial begins; more participant-friendly consent forms); and (4) thinking and writing about the ethical challenges posed by these theories, to safeguard public trust in health research. Our international multidisciplinary team is uniquely qualified to do this work, which will help improve the health care system by optimizing the process of clinical trial recruitment.