Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews

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dc.contributor.authorWurz, Amanda
dc.contributor.authorEllis, Kelsey
dc.contributor.authorNordlund, Julia
dc.contributor.authorCarrier, Marie-Eve
dc.contributor.authorCook, Vanessa
dc.contributor.authorGietzen, Amy
dc.contributor.authorAdams, Claire
dc.contributor.authorNassar, Elsa-Lynn
dc.contributor.authorRice, Danielle B.
dc.contributor.authorFortune, Catherine
dc.contributor.authorGuillot, Genevieve
dc.contributor.authorMieszczak, Tracy
dc.contributor.authorRichard, Michelle
dc.contributor.authorSauve, Maureen
dc.contributor.authorThombs, Brett D.
dc.date.accessioned2024-01-28T01:03:49Z
dc.date.available2024-01-28T01:03:49Z
dc.date.issued2024-01-27
dc.date.updated2024-01-28T01:03:49Z
dc.description.abstractAbstract Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success.
dc.description.abstractPlain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success.
dc.identifier.citationResearch Involvement and Engagement. 2024 Jan 27;10(1):13
dc.identifier.urihttps://doi.org/10.1186/s40900-024-00546-6
dc.identifier.urihttps://hdl.handle.net/1880/118126
dc.identifier.urihttps://doi.org/10.11575/PRISM/42970
dc.language.rfc3066en
dc.rights.holderThe Author(s)
dc.titleResearcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews
dc.typeJournal Article
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