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

• DOI: 10.2147/ppa.s135457
• Publication Date: 2017-09-13T19:37:05Z
• Authors: Sandra Carroll; Gayathri Embuldeniya; Julia Abelson; Michael McGillion; Alexandre Berkesse; Jeff Healey
• Keywords: Thematic Analysis; Value (mathematics)

Patient engagement in research is a dominant discourse clinical settings as it seen move toward sustainable and equitable health care systems. In Canada, key driver the Strategy for Patient-Oriented Research of Canadian Institutes Health Research, which asserts that meaningful patient can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions meaning value within cardiovascular network. doing so, secondary aim was to inform development structured initiative by identifying potential challenges related mitigation strategies.We employed multi-method strategy involving electronic surveys semi-structured telephone interviews with network scientists across Canada. Interview data were analyzed using thematic content analysis. Survey descriptive statistics.Thirty-eight (response rate =33%) 16 completed members. Some participants uncertain about engagement. While voicing guarded support, four relating identified from interviews: 1) identification representative appropriate patients, 2) uncertainty scope patients' roles given concerns knowledge discrepancies, 3) perceived lack evidence impact engagement, 4) need education culture change prerequisite largely concerned patients untrained science tasked conveying an authentic experience being conduit voices others might unsettle traditional model conducting research.Concerns involvement clarity meaning, process, involvement. highlights on impact, guidance practical aspects implementation this community.