Questioning patient engagement: research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network

Abstract

BackgroundPatient 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.MethodsWe 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.ResultsThirty-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.ConclusionConcerns 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.

Lessons for Patient Engagement in Research in Low- and Middle-Income Countries

“…Patients are often not aware of how they can be effective research collaborators and that their participation in research can be beneficial. They often presume their knowledge and training in research is inadequate [37], and therefore not useful. However, patients can be coached to recognize that knowledge and expertise come in many forms, and that lived experience is just as valuable as clinical or research knowledge, even if it is different [8,37].…”

“…They often presume their knowledge and training in research is inadequate [37], and therefore not useful. However, patients can be coached to recognize that knowledge and expertise come in many forms, and that lived experience is just as valuable as clinical or research knowledge, even if it is different [8,37]. In Canada, CRRAB working groups have focused on providing a space for patients to share their lived experience while also connecting them to training and tools to be effective partners, such as online introductory courses on research [1,14].…”

“…In addition, the idea of patients as research collaborators may be difficult for non-patients (i.e., physicians, researchers, allied healthcare professionals) to accept. For example, it may be challenging for patients to share their experience if non-patient attitudes to patient participation are dismissive [37]. Patients have expressed the need for a culture shift to reweigh the scales of power, and encourage active listening on the part of health and research professionals such that patient values are incorporated into treatment plans or research [8, 38,39].…”

Involving patients and publics in medical and health care research studies: an exploratory survey on participant recruiting and representativeness from the perspective of study authors

“…Others assessed how representativeness is understood in different contexts using qualitative interviews [17], and current challenges from the perspective of research network members [22]. While the latter did not address representativeness per se, they even speak of a "crisis of representation".…”

“…Various previous studies assess and debate PPI terminology and the challenges it entails [2,13,14], different types of representativeness and how they are used [17,19], and current PPI practices more broadly [20][21][22][23], using for instance debates, framework developments, and literature reviews. Few studies take a more practice-oriented approach by conducting interviews with professionals on PPI in general [24,25], and with small sample sizes [17,22]. The GRIPP2 checklist for reporting PPI in research recommends to describe and transparently define the individual steps taken during PPI, such as the definition of PPI for that study and the methods used [26].…”