Using qualitative research perspectives to inform patient engagement in research

Michelle Phoenix,Sandra Vanderkaay,Linda Nguyen,Stephen J Gentles,Tram Nguyen,Andrea Cross

doi:10.1186/s40900-018-0107-1

Abstract

Plain English summaryIn Canada, and internationally, there is an increased demand for patient engagement in health care research. Patients are being involved throughout the research process in a variety of roles that extend beyond the traditional passive participant role. These practices, referred to collectively as ‘patient engagement’, have raised questions about how to engage patients in the research process. Specifically, researchers have noted a lack of theory underpinning patient engagement and are looking for guidance on how to select patients and engage patients throughout the research process. In this commentary, we draw on qualitative research perspectives to generate theoretical and methodological ideas that novice or experienced researchers can apply to facilitate patient engagement in research.Despite the recent advancements in patient engagement in health care research, there is limited research evidence regarding the best strategies for developing and supporting research partnerships with patients and caregivers. Three particular outstanding concerns that have been reported in the literature and that we will explore in this commentary are: (i) the lack of theoretical underpinning to inform the practice of patient engagement in research; (ii) the lack of knowledge regarding how to select patients to engage in research; and (iii) the lack of clear guidance about the best methods for engaging patients in research. We draw on qualitative research perspectives to reflect on these three areas of concern and propose insights into the theory and methods that we believe are useful for engaging patients in research.

Highlights

Using qualitative perspectives to inform the theoretical underpinnings of patient engagement in research Qualitative research seeks to understand people’s experiences, and circumstances, as well as the underlying meanings shaped from people’s perspectives; thereby accepting the belief that an individuals’ experience of the world is subjective and may be different from one person to another [13]
As pediatric rehabilitation researchers who have conducted qualitative research, we recognize the value of engaging patients in the research process
Following their systematic review of the literature on patient engagement in research Domecq and colleagues [5] identified three main areas of concern where guidance is needed: (i) the lack of theoretical underpinning to inform the practice of patient engagement in research; (ii) the lack of knowledge regarding how to select patients to engage in research; and (iii) the lack of clear guidance about the best methods for engaging patients in research

Summary

Background

As pediatric rehabilitation researchers who have conducted qualitative research, we recognize the value of engaging patients in the research process. Several benefits of engaging patients in the research process, as identified by patients and researchers, include increased relevance and applicability of research outcomes [2–4], increased patient enrollment and retention [5, 6], and increased partnership development and patient empowerment [7, 8]. Following their systematic review of the literature on patient engagement in research Domecq and colleagues [5] identified three main areas of concern where guidance is needed: (i) the lack of theoretical underpinning to inform the practice of patient engagement in research; (ii) the lack of knowledge regarding how to select patients to engage in research; and (iii) the lack of clear guidance about the best methods for engaging patients in research. We framed our discussion according to the concerns presented by Domecq and colleagues [5] because their recent systematic review has been widely cited and it sparked our discussion regarding how qualitative research perspectives can provide theoretical and methodological insights to facilitate patient engagement in research

Main text

Conclusions