Peripartum women’s perspectives on research study participation in the OneFlorida Clinical Research Consortium

To evaluate research participation experiences and preferences among Florida women likely eligible to participate in clinical research studies related to pregnancy and postpartum. Participants were 18 years or older, pregnant or had an infant, and lived in Florida within 50 miles of sites participating in the OneFlorida Clinical Research Consortium. April to September 2020, respondents took a Qualtrics survey about socio-demographics, prior experiences with research, and barriers/facilitators to participation. Of 533 respondents, most were between 25-34 years of age (n=259, 49%), had a college degree (n=250, 47%), and identified as White (n=303, 47%) and non-Hispanic (n=344, 65%). Among those reporting prior research participation (n=129, 24%), over half participated in pregnancy-related research (n=74, 60%). The most frequently investigated pregnancy topic was allergy and immunology (n=37, 29%). The most common barriers to research participation were: study goals not well explained, discomforts to the infant, family concern, and time commitment. Participants preferred text (n=303, 57%) or email (n=296, 56%) as communication methods and only 19% preferred evening study visits. Recruitment through existing healthcare relations (i.e. physician) was perceived as the best way to learn about clinical research studies. In determining whether to participate, strong personal social ties (e.g. spouse) had greater importance than weak ties (e.g. neighbor/co-worker), with the most important voice being “myself.” Human milk, saliva and urine were highly favorable in terms of biospecimen collection and more than half of participants had a positive response to releasing personal health information and participating in a randomized study. Women during pregnancy and postpartum were interested in clinical studies that require non-invasive biospecimen collection. Effective recruitment of women in perinatal studies should consider protocols that account for physical discomfort, communication style and time commitments.