What does patient engagement mean for Canadian National Transplant Research Program Researchers?

Julie Allard,Samantha J Anthony,Linda Wright,Marie-Chantal Fortin,Greg Knoll,Vincent Dumez,David Hartell,Fabián Ballesteros

doi:10.1186/s40900-018-0096-0

Abstract

Plain English summaryIn recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research.We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement.This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP.BackgroundInvolving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada.ObjectiveThe aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research.MethodsWe conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses.ResultsThe researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support.ConclusionThis study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.

Highlights

In recent years, the patient’s involvement in research has extended beyond the role of research participant
Further studies are needed to assess the implementation of patient engagement (PE) strategy within the Canadian National Transplant Research Program (CNTRP) and its impact
One researcher reported patients’ eagerness to be involved in the research process, and their concerns with the commitment required; “[E]nthusiasm was incredibly high, and there were two things that happened with the patients: one was that the patients felt very honoured and excited that their input was being solicited; the other [...] was that we included them on a number of phone calls and I think they felt quite lost sometimes and not useful, and overwhelmed.” (R06)

Summary

Introduction

The patient’s involvement in research has extended beyond the role of research participant. The CNTRP aims to increase PE in research and support novel approaches that integrate patients and families as active participants across the research network. To achieve this goal of PE, the CNTRP conducted a pilot workshop in 2014 in French with 10 patients and 5 researchers, in Montréal, Quebec, to identify research priorities. [13] To develop and implement a strategy for PE in research within the CNTRP, it is important to understand researchers’ attitudes This exploratory and qualitative study aimed to describe CNTRP researchers’ perspectives on PE before and after their participation in a national priority-setting workshop with patients, caregivers and clinicians. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada

Methods

Results

Discussion

Conclusion