Abstract
Background
Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.
Methods
We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.
Results
Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.
Conclusion
Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.
Supplementary materials
Figure S1 Patient engagement prevention network (C-SPIN) – interview guide.
Abbreviations: C-SPIN, Canadian Stroke Intervention Network; EP, electrophysiologist; MD, medical doctor.
Figure S2 Electronic survey patient engagement.
Abbreviation: C-SPIN, Canadian Stroke Intervention Network.
Acknowledgments
We are grateful to Angie Djuric and Kimberly Begley, who assisted with the scheduling and conducting of the interviews; to Katherine Allan, who assisted with analysis of our survey data; and to [F] David and [A] Annette, who provided feedback on the manuscript in their capacity as patient partners at C-SPIN. Dr Healey is supported by a Heart and Stroke Foundation of Ontario Mid-Career Award (MC7450).
Disclosure
The authors report no conflicts of interest in this work.