Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation

Research Involvement and Engagement

Denise Hêtu¹  Ginette Ladouceur¹  Marie-Josée Cozmano¹  Marie-Ève Thibault¹  Janie Boulianne-Gref¹  Nathalie Ouellet¹  Louise Gagné¹  Claude Quintin¹  Marie-Pier Houde¹  Marie-Josée Fortier¹  Amy Svotelis¹  Susan C. Mastine¹  Christian-Alexandre Castellano¹  Luc Beaubien¹  Jaime Borja¹  David Héraud¹  Sylvie Breton¹  Denise Boilard¹  Denis Boutin¹  Gisèle Charpentier¹  Avinash Ramnarine¹  Catherine Wilhelmy¹  Annie Morin¹  Edouard Botton¹  Christine Loignon²  Marie-Claude Battista³  Pierre Dagenais⁴  Marjolaine Landry⁵  William D. Fraser⁶  Francois-Pierre Counil⁷  Elisabeth Leblanc⁸  Maryse Berthiaume⁹  Caroline Francoeur^1,10  Valéry Lussier^1,10  Guy Drouin^1,11 

[1] Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Centre de recherche - Charles-Le Moyne – Saguenay – Lac-Saint-Jean sur les innovations en santé (CR-CSIS), Québec, Canada;Department of Emergency and Family Medicine, Université de Sherbrooke, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001, 12e Avenue Nord, J1H 5N4, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Medicine, Rheumatology Division, Université de Sherbrooke, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Nursing, Université du Québec à Trois-Rivières, Trois-Rivières, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Obstetrics and Gynecology, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Pediatrics, Université de Sherbrooke, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Department of Surgery, Orthopedics Division, Université de Sherbrooke, Sherbrooke, Québec, Canada;Centre de recherche du CHUS, Sherbrooke, Québec, Canada;Direction de la coordination de la mission universitaire, Centre Intégré Universitaire de Santé et des Services Sociaux de l’Estrie – Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada;Direction de la coordination de la mission universitaire, Centre Intégré Universitaire de Santé et des Services Sociaux de l’Estrie – Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke, Québec, Canada;Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, Québec, Canada;

关键词: Patient engagement;    Research;    Governance;    Patient and public involvement;    Partnership;    Contribution;    Patients networking;   

DOI  :  10.1186/s40900-021-00258-1

来源: Springer

【 摘 要 】

BackgroundMedical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this “top-down” approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either patients’ or the researchers’. The question our group raised from this observation was: “How to generate a cultural shift toward a fruitful and long-lasting collaboration between patients and researchers? A “bottom-up” approach was key to our stakeholders. The overall objective was to build a trusting and bidirectional-ecosystem between patients and researchers. The specific objectives were to document: 1) the steps that led to the development of the first patient-partner strategic committee within a research center in the Province of Québec; 2) the committee’s achievements after 3 years.MethodsEighteen volunteer members, 12 patient-partners and 6 clinician/institutional representatives, were invited to represent the six research themes of the Centre de recherche du CHU de Sherbrooke (CRCHUS) (Quebec, Canada). Information on the services offered by Committee was disseminated internally and to external partners. Committee members satisfaction was evaluated.ResultsFrom May 2017 to April 2020, members attended 29 scheduled and 6 ad hoc meetings and contributed to activities requiring over 1000 h of volunteer time in 2018–2019 and 1907 h in the 2019–2020 period. The Committee’s implication spanned governance, expertise, and knowledge transfer in research. Participation in these activities increased annually at local, provincial, national and international levels. The Patient-Partner Committee collaborated with various local (n = 7), provincial (n = 6) and national (n = 4) partners. Member satisfaction with the Committee’s mandate and format was 100%.ConclusionsThe CRCHUS co-constructed a Patient-Partner Strategic Committee which resulted in meaningful bilateral, trusting and fruitful collaborations between patients, researchers and partners. The “bottom-up” approach - envisioned and implemented by the Committee, where the expertise and the needs of patients complemented those of researchers, foundations, networks and decision-makers - is key to the success of a cultural shift. The CRCHUS Committee created a hub to develop the relevant intrinsic potential aimed at changing the socio-cultural environment of science.

【 授权许可】

CC BY