IMPROVING PATIENT PARTICIPATION IN LONGITUDINAL RESEARCH: AN INNOVATIVE PATIENT-LED PATIENT-ORIENTED QUALITATIVE RESEARCH PROJECT TO UNDERSTAND THE MOTIVATIONS AND BARRIERS TO GETTING AND STAYING INVOLVED IN THE IMAGINE SPOR STUDY

Abstract

Abstract Background The Inflammation, Microbiome, & Alimentation, Gastro-Intestinal & Neuropsychiatric Effects (IMAGINE) Strategy for Patient-Oriented Research (SPOR) Network is conducting a large longitudinal research study to investigate 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 2000 patients with Crohn’s disease, 2000 with ulcerative colitis, 2000 with 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. Given the ambitious recruitment target, 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 this study to inform more effective recruitment and retention strategies. Methods This study has been 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 7 PRPs and were recorded electronically. All of the interviews were transcribed by a PRP, a trained medical transcriptionist. Five PRPs conducted data analysis and coded the interview content into common themes. Results A total of 27 interviews (13 male and 14 female) were conducted. Participants ranged from 20–75 years old. The top four themes of key motivators to study participation that emerged were Convenience, Experience, Communication, and Compensation. The interview participants identified Convenience as being low time commitment, the 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. Conclusions This study was co-created by PRPs who were actively involved throughout all stages of the project. The results from this patient-led study will help inform adaptations to recruitment and retention strategies for the national IMAGINE SPOR study.