Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

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dc.contributor.authorChudyk, Anna M.
dc.contributor.authorStoddard, Roger
dc.contributor.authorDuhamel, Todd A.
dc.contributor.authorSchultz, Annette S. H.
dc.date.accessioned2024-03-06T17:50:13Z
dc.date.available2024-03-06T17:50:13Z
dc.date.issued2024-02-14
dc.date.updated2024-03-01T04:35:42Z
dc.description.abstractBackground Patient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. Methods The study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (nā€‰=ā€‰30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5ā€“3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop. Results Our participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all. Conclusions Future directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.
dc.identifier.citationHealth Research Policy and Systems. 2024 Feb 14;22(1):24
dc.identifier.doi10.1186/s12961-024-01106-w
dc.identifier.urihttp://hdl.handle.net/1993/38044
dc.language.isoeng
dc.language.rfc3066en
dc.publisherBMC
dc.rightsopen accessen_US
dc.rights.holderThe Author(s)
dc.subjectPatient engagement
dc.subjectPatient engagement in research
dc.subjectPatient-oriented research
dc.subjectParticipatory workshop
dc.subjectPatient and public involvement
dc.subjectPatient involvement
dc.subjectMulti-stakeholder engagement
dc.subjectCapacity building
dc.subjectParticipatory process
dc.titleFuture directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers
dc.typeJournal Article
local.author.affiliationRady Faculty of Health Sciences::College of Pharmacy
oaire.citation.issue24
oaire.citation.titleHealth Research Policy and Systems
oaire.citation.volume22
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