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

• Published in: Research involvement and engagement Vol. 10; no. 1; p. 13
• Main Authors: Wurz, Amanda, Ellis, Kelsey, Nordlund, Julia, Carrier, Marie-Eve, Cook, Vanessa, Gietzen, Amy, Adams, Claire, Nassar, Elsa-Lynn, Rice, Danielle B, Fortune, Catherine, Guillot, Genevieve, Mieszczak, Tracy, Richard, Michelle, Sauve, Maureen, Thombs, Brett D
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 27.01.2024; BioMed Central; BMC
• Subjects: Autoimmune diseases; Co-presentation; Conferences, meetings and seminars; Content analysis; Dissemination; Experiences; Interviews; Medical research; Patient engagement; Patient-oriented; Patients; Qualitative research; Research ethics; Researchers; Scleroderma; Scleroderma (Disease); Systematic review; Systemic scleroderma; Canada; Co-presentation; Patient engagement; Patient-oriented; Scleroderma; Dissemination; Experiences
• ISSN: 2056-7529; 2056-7529
• DOI: 10.1186/s40900-024-00546-6

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. 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. 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. 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.