The IMAGINE Network’s main research study, MAGIC, is a large longitudinal national cohort study investigating the interactions between inflammation, microbiome, diet and mental health in patients with inflammatory bowel disease(IBD) and irritable bowel syndrome (IBS). This study aims to recruit 8000 subjects (2000 CD, 2000 UC, 2000 IBS, and 2000 healthy controls). Each subject is assessed annually for 4 years and is asked to submit blood, urine and stool samples, and complete online questionnaires on their health status. To date, over 4400 subjects have been recruited but, approximately 10% of the subjects have withdrawn from the study – the primary reason cited has been “No longer interested”. Given the study’s ambitious recruitment target and long-term commitment, a group of IMAGINE Patient Research Partners (PRPs) led a qualitative study to better understand the motivations and barriers of healthy controls to participating in MAGIC to inform more effective recruitment and retention strategies.
This study was co-led, co-designed and executed by IMAGINE’s PRPs with support from academic researchers. PRPs were trained in qualitative research, co-designed the interview guide, and developed a semi-structured interview guide. Qualitative semi-structured interviews were conducted by seven PRPs and were recorded electronically. All of the interviews were transcribed by a PRP, a trained medical transcriptionist. Five PRPs conducted the data analysis by coding the interview content into common themes.
A total of 27 interviews (13 male and 14 female) were conducted. Participants ranged from 20-75 years old and did not have either IBD or IBS. The top four themes of key motivators to study participation that emerged were Convenience, Experience, Communication, and Compensation. Participants identified Convenience as being low time commitment, flexibility of scheduling, multiple recruitment locations or using a courier for collecting samples. The Experience category reflects the desire to stay involved if their experience is relaxed, hassle-free, and fun, with emphasis on the study being well-organized. Participants stressed the importance of Communication such as reminders, annual updates, and newsletters. Compensation was important to some participants such as gift cards, parking reimbursement, or non-monetary items such as thank you cards and tokens of appreciation. The following mind map summarizes these findings:
The findings were shared with MAGIC’s Site Directors and Research Coordinators during their monthly meetings to identify pragmatic solutions that could be implemented locally immediately. Furthermore, strategies that could are deemed low-cost and high-impact will also be considered for national roll-out. This project was recently accepted as an abstract to the Alberta SPOR Support Unit’s Virtual Institute as we hope that its findings will help inform recruitment and retention strategies for other long-term and high-commitment cohort clinical studies.