Pilot Project

Ilene F. Wilets
Ilene F. Wilets, PhD
Assistant Professor Emergency Medicine
Mount Sinai School of Medicine

Understanding barriers toward research participation:Perceptions of study risk, burden, and limited public trust

Clinical research is the means for translating innovation into the diagnosis, treatment and prevention of acute and chronic disease into clinical practice. In order for Mount Sinai's newly established Institutes of Clinical and Translational Sciences (MSICTS) to achieve its mission of moving innovative research from bench to bedside -- it must be able to successfully enroll subjects into clinical studies. The existing literature on clinical trial participation indicates that the general public is wary and ambivalent about science and medical research. The literature suggests that distrust of science and medicine is most evident among minority group members, whom are substantially represented within Mount Sinai's patient catchment area.

This application proposes to study how community members currently perceive clinical and translational research; how perceptions of study risk, benefit, burden -- and level of trust in science and research -- moderate decision-making for study participation. This proposal will accomplish its specific aims through a series of focus groups and interviews with community members, as well as through in-depth interviews with clinical investigators across five high research productivity disciplines: Medicine, Oncology, Cardiology, Pediatrics and Psychiatry. We will use these data to conceptualize and statistically model the barriers that impede study participation. It is anticipated that this information will lead to the development of informed strategies to enhance research enrollment within the Sinai system, as well as contribute to the generalizable knowledge on decision-making for clinical trial participation. The PI plans to use these pilot data to be responsive to an NIH Program Announcement supporting empirical research on decision-making for research participation.