{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T02:05:21Z","timestamp":1788314721673,"version":"build-2803163510"},"reference-count":37,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Particip Med"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Patient engagement in research is the meaningful and active involvement of patient and caregiver partners (ie, patients and their family or friends) in research priority-setting, conduct, and governance. With the proper support, patient and caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n This participatory qualitative study aimed to answer the question: What are the facilitators and barriers to patient engagement experienced by patient and caregiver partners in a Canadian research context?<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Participants were N=13 patient and caregiver partners (median age 62 y, IQR 58-69 y; 11\/13, 85% women; 13\/13, 100% White) from 4 provinces who completed 60\u201090-minute semistructured videoconferencing interviews. The interviews were transcribed verbatim. A researcher and a patient partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using participatory theme elicitation alongside 7 patient and caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n We generated four themes depicting factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations; (2) demonstrating the value and impact of engagement; (3) psychological safety; and (4) community outreach, training, and education. We then discuss how barriers to enacting these 4 factors can be mitigated and provide a practical checklist of considerations for both researchers and patient and caregiver partners for engaging together throughout the research cycle.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Research teams conducting patient and caregiver engagement activities should draw from our findings to mitigate barriers and facilitate meaningful engagement experiences.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/79538","type":"journal-article","created":{"date-parts":[[2025,9,4]],"date-time":"2025-09-04T20:00:07Z","timestamp":1757016007000},"page":"e79538-e79538","source":"Crossref","is-referenced-by-count":3,"title":["Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study"],"prefix":"10.2196","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4086-2097","authenticated-orcid":false,"given":"Sasha Melanda","family":"Kullman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-5816-7440","authenticated-orcid":false,"given":"Louise","family":"Bird","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-7570-4173","authenticated-orcid":false,"given":"Amy","family":"Clark","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-0411-8367","authenticated-orcid":false,"given":"Amanda","family":"Doherty-Kirby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-1196-2119","authenticated-orcid":false,"given":"Diana","family":"Ermel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-5202-4720","authenticated-orcid":false,"given":"Nathalie","family":"Kinnard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-6575-6196","authenticated-orcid":false,"given":"Marion","family":"Knutson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-1076-8274","authenticated-orcid":false,"given":"Andrew","family":"Milroy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6910-5973","authenticated-orcid":false,"given":"Lesley","family":"Singer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8476-2093","authenticated-orcid":false,"given":"Anna Maria","family":"Chudyk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2025,9,30]]},"reference":[{"key":"R1","unstructured":"Strategy for patient-oriented research \u2013 patient engagement framework. 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