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

Amanda Wurz; Kelsey Ellis; Julia Nordlund; Marie-Eve Carrier; Vanessa Cook; Amy Gietzen; Claire Adams; Elsa-Lynn Nassar; Danielle B Rice; Catherine Fortune; Genevieve Guillot; Tracy Mieszczak; Michelle Richard; Maureen Sauve; Brett D Thombs

doi:10.1186/s40900-024-00546-6

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

Res Involv Engagem. 2024 Jan 27;10(1):13. doi: 10.1186/s40900-024-00546-6.

Authors

Amanda Wurz^{1

2}, Kelsey Ellis³, Julia Nordlund⁴, Marie-Eve Carrier⁴, Vanessa Cook⁴, Amy Gietzen⁵, Claire Adams^{4

6}, Elsa-Lynn Nassar^{4

7}, Danielle B Rice^{8

9}, Catherine Fortune¹⁰, Genevieve Guillot¹¹, Tracy Mieszczak¹², Michelle Richard¹³, Maureen Sauve¹⁴, Brett D Thombs^{4

6

7

15

16

17}

Affiliations

¹ School of Kinesiology, University of the Fraser Valley, 45190 Caen Ave, Chilliwack, BC, V2R 0N3, Canada. amanda.wurz@ufv.ca.
² Faculty of Kinesiology, University of Calgary, Calgary, AB, Canada. amanda.wurz@ufv.ca.
³ Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁴ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
⁵ National Scleroderma Foundation, Tri-State Chapter, New York, USA.
⁶ Department of Psychiatry, McGill University, Montreal, QC, Canada.
⁷ Department of Psychology, McGill University, Montreal, QC, Canada.
⁸ Mood Disorders Treatment and Research Centre, St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada.
⁹ Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
¹⁰ Ottawa Scleroderma Support Group, Ottawa, ON, Canada.
¹¹ Sclérodermie Québec, Longueuil, QC, Canada.
¹² Rochester Scleroderma Support Group, National Scleroderma Foundation, New York, USA.
¹³ Scleroderma Atlantic, Halifax, NS, Canada.
¹⁴ Scleroderma Society of Ontario, Hamilton, ON, Canada.
¹⁵ Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
¹⁶ Department of Medicine, McGill University, Montreal, QC, Canada.
¹⁷ Biomedical Ethics Unit, McGill University, Montreal, QC, Canada.

Abstract

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.

Keywords: Co-presentation; Dissemination; Experiences; Patient engagement; Patient-oriented; Scleroderma.

Plain language 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.