Patient research partners help crack the code of recruiting and retaining study participants

Aida Fernandes, IMAGINE Executive Director

Canada has among the highest rates of inflammatory bowel disease (IBD) in the world, with six million Canadians affectedFootnote 1. To increase our understanding of the condition, the causes of which are not known, the IMAGINE (Inflammation, Microbiome & Alimentation, Gastro-Intestinal & Neuropsychiatric Effects) SPOR Network has launched a five-year study called MAGIC (Mind and Gut Interactions Cohort). The study is investigating the ways in which inflammation, microbiome, diet, and mental health interact in patients with IBD and irritable bowel syndrome (IBS). Given the large-scale recruitment target of 8,000 patients, a group of IMAGINE’s Patient Research Partners (PRPs) led a project to better understand people’s motivations and barriers to participating in the research study, with the goal of recruiting and retaining as many participants as possible.

PRPs are patient representatives and caregivers from across Canada who provide guidance and direction to the IMAGINE Network, using their lived experience to ensure the Network addresses the unique needs of patients.

The project was co-led, co-designed and executed by IMAGINE’s PRPs with support from academic researchers. PRPs received training in qualitative research and then developed a semi-structured interview guide and conducted the data analysis by organizing the interview responses into common themes.

The top four motivating themes that emerged from the project were convenience, experience, communication, and compensation. Participants identified topics of importance under each category: 

  • Convenience: respondents identified the importance of low time commitment, flexibility of scheduling, and the use of multiple recruitment locations or a courier for collecting samples.
  • Experience: respondents expressed a willingness to stay involved in the study if they found the environment to be relaxed, hassle-free, and fun, with an emphasis on the study being well organized.
  • Communication: respondents expressed a desire to be kept informed of the study’s progress through reminders, annual updates, and newsletters.
  • Compensation: respondents highlighted the importance of gift cards, parking reimbursement, or non-monetary items such as thank-you cards and tokens of appreciation.

The results from this project are informing the recruitment and retention strategies for the MAGIC study, and have led to the production of a series of videos with IMAGINE patients, researchers, and clinicians. “Our Get To Know Us Virtual Interview Series videos over social media help explain the benefits of the research and recognize the value of study participants,” says IMAGINE Executive Director, Aida Fernandes. “We are thrilled that PRPs took on this project to help us achieve our goal of 8,000 participants.”

The findings from this project were presented as an abstract at the AbSPORU Virtual Institute 2020 (led by the Alberta SPOR SUPPORT Unit) and the Crohn’s and Colitis Foundation of America’s Congress.

About the study

The MAGIC study involves 75 researchers from 17 hospitals and universities across Canada. Throughout the study, a cohort of patients with IBS and IBD, and participants in a control group, are  followed for five years and their dietary and mental health information and biological samples are collected to assess their gastrointestinal and psychological symptoms in association with their diet and gut microbiome.

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