Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #121432

Julka Almquist, MPH¹, Steven J. Jacobsen, MD, PhD¹, Timothy Beebe, PhD², Christina Smith¹, and Celine Vachon, PhD¹. (1) Department of Health Sciences Research, Division of Epidemiology, Mayo Clinic College of Medicine, 200 First Street S.W., Rochester, MN 55905, 507-538-0225, almquist.julka@mayo.edu, (2) Survey Research Center, Division of Biostatistics, Department of Health Sciences Research, Mayo Clinic College of Medicine, 200 First Street S.W., Rochester, MN 55905

Participation rates in epidemiologic surveys have been decreasing over the past decade; however, there is little understanding of why nonparticipation occurs. Germane theoretical frameworks suggest that opportunity cost, burden, social isolation, topic interest, authority of sponsor, and general over surveying may contribute to the declining rates, but few studies have investigated this empirically. In our experience recruiting for a large mammography cohort study in a clinical setting, we noted similar decreases in response rates over the past few years. To better understand why some people participated in this cohort study while others did not, we conducted a qualitative research study. A total of 6 focus groups were conducted: two with participants (n=21), four with non-participants (n=27). The questions were divided into three sections; barriers to patients' willingness to participate in the study, attitudes toward receiving study materials, and understanding of the study. Five major categories were revealed as factors in the decision to participate; personal connection, volunteerism (desire to help), loyalty to institution, ease of the study, and a positive attitude toward research. There were seven major categories that factored into decisions not to participate; procrastination, time constraints, perfectionism, survey overload, no personal benefit, confusion about eligibility, and unpleasant associations with the subject. These data demonstrate that factors related to decisions to participate or not participate in a research study do not necessarily stem from opposite poles of the spectrum on a single construct. Our findings may help researchers to reduce the barriers and increase participation in future epidemiologic studies.

Learning Objectives: At the conclusion of the session, the participant (learner) will be able to

• understand the possible causes of nonparticipation in epidemiologic studies;
• identify the relative importance of the different reasons for participation and non-participation in this particular study; and
• apply the findings to future epidemiologic investigations to help ensure representative participation from those approached to do so.

Keywords: Data Collection, Research

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.

Recorded presentation