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
Abstract Background Medical 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 d...
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| Format: | Article |
| Language: | English |
| Published: |
BMC
2021-03-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-021-00258-1 |
| _version_ | 1819119943028834304 |
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| author | Denis Boutin Susan C. Mastine Luc Beaubien Maryse Berthiaume Denise Boilard Jaime Borja Edouard Botton Janie Boulianne-Gref Sylvie Breton Christian-Alexandre Castellano Gisèle Charpentier Francois-Pierre Counil Marie-Josée Cozmano Pierre Dagenais Guy Drouin Marie-Josée Fortier Caroline Francoeur Louise Gagné David Héraud Denise Hêtu Marie-Pier Houde Ginette Ladouceur Marjolaine Landry Elisabeth Leblanc Christine Loignon Valéry Lussier Annie Morin Nathalie Ouellet Claude Quintin Avinash Ramnarine Catherine Wilhelmy Amy Svotelis Marie-Ève Thibault William D. Fraser Marie-Claude Battista |
| author_facet | Denis Boutin Susan C. Mastine Luc Beaubien Maryse Berthiaume Denise Boilard Jaime Borja Edouard Botton Janie Boulianne-Gref Sylvie Breton Christian-Alexandre Castellano Gisèle Charpentier Francois-Pierre Counil Marie-Josée Cozmano Pierre Dagenais Guy Drouin Marie-Josée Fortier Caroline Francoeur Louise Gagné David Héraud Denise Hêtu Marie-Pier Houde Ginette Ladouceur Marjolaine Landry Elisabeth Leblanc Christine Loignon Valéry Lussier Annie Morin Nathalie Ouellet Claude Quintin Avinash Ramnarine Catherine Wilhelmy Amy Svotelis Marie-Ève Thibault William D. Fraser Marie-Claude Battista |
| author_sort | Denis Boutin |
| collection | DOAJ |
| description | Abstract Background Medical 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. Methods Eighteen 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. Results From 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%. Conclusions The 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. |
| first_indexed | 2024-12-22T06:12:48Z |
| format | Article |
| id | doaj.art-a3ce090598d4483ab5f8e281b7ddb15b |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-12-22T06:12:48Z |
| publishDate | 2021-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-a3ce090598d4483ab5f8e281b7ddb15b2022-12-21T18:36:11ZengBMCResearch Involvement and Engagement2056-75292021-03-017111710.1186/s40900-021-00258-1Patient-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 implementationDenis Boutin0Susan C. Mastine1Luc Beaubien2Maryse Berthiaume3Denise Boilard4Jaime Borja5Edouard Botton6Janie Boulianne-Gref7Sylvie Breton8Christian-Alexandre Castellano9Gisèle Charpentier10Francois-Pierre Counil11Marie-Josée Cozmano12Pierre Dagenais13Guy Drouin14Marie-Josée Fortier15Caroline Francoeur16Louise Gagné17David Héraud18Denise Hêtu19Marie-Pier Houde20Ginette Ladouceur21Marjolaine Landry22Elisabeth Leblanc23Christine Loignon24Valéry Lussier25Annie Morin26Nathalie Ouellet27Claude Quintin28Avinash Ramnarine29Catherine Wilhelmy30Amy Svotelis31Marie-Ève Thibault32William D. Fraser33Marie-Claude Battista34Centre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSFaculty of Medicine and Health Sciences, Université de SherbrookeCentre de recherche du CHUSDirection de la coordination de la mission universitaire, Centre Intégré Universitaire de Santé et des Services Sociaux de l’Estrie – Centre Hospitalier Universitaire de SherbrookeCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSDirection de la coordination de la mission universitaire, Centre Intégré Universitaire de Santé et des Services Sociaux de l’Estrie – Centre Hospitalier Universitaire de SherbrookeCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSCentre de recherche du CHUSAbstract Background Medical 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. Methods Eighteen 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. Results From 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%. Conclusions The 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.https://doi.org/10.1186/s40900-021-00258-1Patient engagementResearchGovernancePatient and public involvementPartnershipContribution |
| spellingShingle | Denis Boutin Susan C. Mastine Luc Beaubien Maryse Berthiaume Denise Boilard Jaime Borja Edouard Botton Janie Boulianne-Gref Sylvie Breton Christian-Alexandre Castellano Gisèle Charpentier Francois-Pierre Counil Marie-Josée Cozmano Pierre Dagenais Guy Drouin Marie-Josée Fortier Caroline Francoeur Louise Gagné David Héraud Denise Hêtu Marie-Pier Houde Ginette Ladouceur Marjolaine Landry Elisabeth Leblanc Christine Loignon Valéry Lussier Annie Morin Nathalie Ouellet Claude Quintin Avinash Ramnarine Catherine Wilhelmy Amy Svotelis Marie-Ève Thibault William D. Fraser Marie-Claude Battista 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 Patient engagement Research Governance Patient and public involvement Partnership Contribution |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | patient partner engagement at the centre de recherche du chus in the province of quebec canada from an intuitive methodology to outreach after three years of implementation |
| topic | Patient engagement Research Governance Patient and public involvement Partnership Contribution |
| url | https://doi.org/10.1186/s40900-021-00258-1 |
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