Defining Future Research Priorities in Donation and Organ and Stem Cell Transplantation With Patients, Families, Caregivers, Healthcare Providers and Researchers Within the Canadian National Transplant Research Program

Abstract

Background. Patients, families, and caregivers have a unique understanding of the diseases they live with and provide care for every day. Their experience and expertise are important and should be taken into consideration when determining research priorities. The aim of this study was to gather the perspectives of Canadian patients, families, caregivers, researchers, and healthcare professionals on what research priorities were important to them in the field of organ and hematopoietic cell transplantation (HCT) and donation within the Canadian National Transplant Research Program (CNTRP). Methods. The CNTRP developed a national consultation process, which included a Web-based survey and in-person workshop, to ascertain and validate the viewpoints of the Canadian donation and transplant community. The Web-based survey identified 3 principal research priorities (increasing donation, developing better antirejection drugs and developing tolerance), which were further refined and prioritized during the one-and-a-half day national workshop held in Toronto in November 2015. Results. A total of 505 participants answered the Web-based survey, and 46 participants (28 patients, 12 researchers and 6 healthcare professionals) participated in the in-person workshop. Workshop participants ranked the following 2 priorities as the most important in the fields of donation, HCT, and solid organ transplantation: methods for developing a culture of donation (within healthcare organizations and throughout society); and methods for improving graft survival and antirejection therapy. Conclusion. The CNTRP will use these results to prioritize future research projects and studies in donation, HCT, and solid organ transplantation in the years to come.