Patient-Researcher Partnership Platform within the Canadian National Transplant Research Program: The First Year Experience
M-.C. Fortin,2,3,6 S. Bédard,1,2 J. Allard,2,3 F. Ballesteros,2,3 S. Anthony,2,4,5 A. Boivin,1,3 A. Lespérance,1,3 D. Hartell.2
1Centre of Excellence for Partnership with Patients and the Public, Montreal, Canada
2Canadian National Transplant Research Program, Ottawa, Canada
3Centre de Recherche du CHUM, Montreal, Canada
4Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Canada
5The Hospital for Sick Children, Toronto, Canada
6Transplant and Nephrology Division, Centre Hospitalier de l'Universite de Montreal, Montreal, Canada.
Meeting: 2018 American Transplant Congress
Abstract number: B339
Keywords: Psychosocial
Session Information
Session Name: Poster Session B: Non-Organ Specific: Economics, Public Policy, Allocation, Ethics
Session Type: Poster Session
Date: Sunday, June 3, 2018
Session Time: 6:00pm-7:00pm
Presentation Time: 6:00pm-7:00pm
Location: Hall 4EF
Background: Patients have unique expertise in the diseases they deal with. The Canadian National Transplant Research Program (CNTRP) is a research initiative that aims to improve the lives of transplant patients and increase organ and tissue donation. Since 2014, the CNTRP has begun to involve patients in research priority-setting activities. Given the willingness to further patient engagement within the CNTRP, the Patient-Researcher Partnership Platform (Core 4) was launched in August 2016. Core 4 is co-led by a transplant patient partner (PP) and a researcher.Objective: To report the Core 4 activities during its first year.Methods: PPs and research professionals (RPs) were invited to complete log book entries to document every interaction pertaining to patient partnership in research. A questionnaire was administered to the PPs and RPs to capture their experience.Results: 26 log book entries were collected. Activities reported were varied: planning for presentations, involvement in the writing of a manuscript, designing survey questions and research questionnaires,helping in presentation of research results in lay terms and participating in analysis of data of research questionnaires. 8 PP and 10 RPs completed the questionnaire. PPs anticipated the following impacts of their partnership: helping to determine which research is important, providing new perspective on research, and helping to disseminate research findings to other patients. RPs predicted the following impact of their partnership with patients: improving communication skills of graduate students, asking better research questions and helping in the recruitment strategy and data collection.Discussion: Patient-researcher partnership activities during its first year of the implementation of the CNTRP Core 4 were varied. Both PPs and RPs anticipate that the partnership will allow them to do research that will be meaningful and appropriate for transplant patients and caregivers.
CITATION INFORMATION: Fortin M-.C., Bédard S., Allard J., Ballesteros F., Anthony S., Boivin A., Lespérance A., Hartell D. Patient-Researcher Partnership Platform within the Canadian National Transplant Research Program: The First Year Experience Am J Transplant. 2017;17 (suppl 3).
To cite this abstract in AMA style:
Fortin M-C, Bédard S, Allard J, Ballesteros F, Anthony S, Boivin A, Lespérance A, Hartell D. Patient-Researcher Partnership Platform within the Canadian National Transplant Research Program: The First Year Experience [abstract]. https://atcmeetingabstracts.com/abstract/patient-researcher-partnership-platform-within-the-canadian-national-transplant-research-program-the-first-year-experience/. Accessed October 9, 2024.« Back to 2018 American Transplant Congress