Vincent Dumez

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

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.AbstractBackground Involving 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. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We 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. Results The 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. Conclusion This 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.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.

Partnering with Patients in Interprofessional Education in Canada and in the USA: Challenges and Strategies

Partnering with patients is an urgent imperative for transforming the health care system to one that is focused on building a culture of health. Data supports this call by demonstrating positive impacts of patient engagement on health outcomes in different settings (CFHI, 2014; IOM, 2014). To respond to this growing trend, health care providers (HCP) need to be trained and educated to become proficient collaborators and nurture collaborative partnerships with patients. However, to date, integrating patients in education and training is considerably less common, and data to support programme development are scarce. A paradigm shift in the health care systems from a paternalist to a patient-as-partner approach is needed (Karazivan et al., 2015; Richards, Montori, Godlee, Lapsley & Paul, 2013). In this chapter, Canadian and American authors from four different universities—leaders in involving patients as educators for health care students—will present their experiences in interprofessional education (IPE). They will examine the processes of integrating partnership with patients in IPE and present how the leadership takes form and is actualised, and discuss evaluation issues.