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Table 2 Patient-partner committee activities and patient’s implications

From: 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

Outreach Year Type of activity Partner / event Description of patient’s implication
Local 2017 Governance CRCHUS1 Development of the patient-partner’s strategic committee internal governance, conflicts of Interest and confidentiality frameworks.
Local 2017 Governance IUPLSSS2, IPP-FMHS3 Consultation and guidance on the financial compensation vision and grid.
Local 2017-2018-2019 Expertise Patient Partner Interinstitutional Committee (IUPLSSS2, IPP-FMHS3, CIUSSSE-CHUS4, CdRV14) This Committee recognizes and improve patient-partners collaboration and engagement in research, healthcare management and training initiatives. In addition to the annual meeting organized by the group and where the PPSC presents its yearly achievement, working sessions are planned to share best practices and develop new tools.
Local 2017 Knowledge transfer (REB members) CIUSSSE-CHUS4 Research Ethics Board Training offered to the local REB board members on patient-engagement.
Local 2017-2018-2019 Knowledge transfer (scientific and web communities) CRCHUS1 Conceptualization and updating of the PPSC’s web page. (https://www.crchus.ca/recherche-clinique/patients-partenaires/)
Local 2017-2018-2019 Knowledge transfer (scientific and web communities) CRCHUS1 Decision-making on content of the CRCHUS’s monthly newsletter (https://www.crchus.ca/medias-publications/infolettre/).
Local 2018 Governance CRCHUS1 Consultation and guidance on the development of the new CRCHUS branding strategy.
Local 2018 Expertise CRCHUS1 Discussions with the CRCHUS’ theme directors on the PPSC’s contribution to the theme development and needs in terms of patient contribution (capacity building).
Local 2018 Research CRCHUS1 IPP-FMSS3 Conceptualization and review of the first Patient-Partner Oriented internal research competition.
Local 2018 Knowledge transfer (physicians and medical residents) CIUSSSE-CHUS4 Orthopedic Division, Annual Scientific Research Meeting Presentation of the PPSC’s vision, mission, objectives in patient engagement in research.
Local 2019 Governance CRCHUS1 Contribution to the 2020–2026 CRCHUS’s strategic plan for financial support from the provincial funding agency (FRQS). The PPSC collaborated to the development of the plan to increase patient engagement in research within the CRCHUS.
Local 2019 Governance CRCHUS1 CIUSSSE-CHUS4 Consultation and guidance on financial compensation issues related to patient participation.
Local 2019 Expertise CRCHUS1 - Cancer theme / Annual Symposium on Cancer Research, Inflammation-Pain theme / Annual scientific day;
Population Health theme s / Annual scientific day;
CIUSSSE-CHUS4 - Surgery Department / Annual scientific day
Oral presentations review committee - “Patient-partner award” award granted to the selected desserving graduate student presentation
Local 2019 Expertise CRCHUS1 - Imaging theme ‘s annual scientific day Presentation of the PPSC’s vision, mission, objectives and achievements on patient engagement and networking with researchers to establish partnerships.
Local 2019 Expertise CIUSSSE-CHUS4 Research Ethic Board Consultation and review of the CIUSSSE-CHUS biobank policy.
Local 2019 Expertise CRCHUS1 Annual Retreat Presentation of the PPSC’s vision, mission, objectives and achievements on patient engagement and networking with researchers to establish partnerships.
Local 2019 Expertise CRCHUS1 - DOCC theme Annual scientific day Networking with researchers to establish partnerships (collaboration between a patient-partner and a basic scientist emerged from this event)
Local 2019 Expertise CRCHUS1Mother/Child theme Annual Retreat Presentation of the PPSC’s vision, mission, objectives and achievements and networking with researchers to establish partnerships (collaboration between a patient-partner and a pediatric psychologist and the idea to develop a Youth Patient-Partner Committee emerged from this event)
Local 2019 Expertise CIUSSSE-CHUS4 HSCTIAU11 Participation to the HSCTIAU advisory committee.
Local 2019 Expertise CIUSSSE-CHUS4 - Musculoskeletal-pain healthcare trajectory Participation to advisory board .
Local 2019 Research CRCHUS1 - Mother/Child theme Establishment of a researcher-patient collaboration to review and adapt the consent form and advice on the feasibility aspects of a cystic fibrosis research project.
Local 2019 Knowledge transfer (scientific, web, physicians, trainees, general audiences, decision-makers) CIUSSSE-CHUS4 Conceptualization of the CIUSSSE-CHUS communication plan to promote patient-engagement internally and with external communities and partners
Local 2019 Knowledge transfer (general audience) CRCHUS 1 – DOCC theme Interviews to local media to promote and recognize patient engagement in research (print media, television, Facebook and radio) https://www.latribune.ca/actualites/sherbrooke/les-patients-partenaires-reconnus-comme-des-experts-7eb2fa54b9d0acc9730712db5cfbb9c1
Provincial 2018 Knowledge transfer (physicians, decision-makers, general audience with interests in breast cancer) First Symposium on Breast Cancer Research of the McPeak-Sirois Group6 Invited speaker to share the PPSC’s vision, mission, objectives and achievements in patient-engagement and to network with researchers, partners and external partners (collaborations with GMPS, QBCF, Coalition Cancer and with breast cancer patients were initiated at this event).
Provincial 2018-2019 Expertise Q-CROC7 Review of patient-oriented documents on clinical trials in oncology awareness (these documents were distributed across the Province of Québec).
Provincial 2018-2019 Knowledge transfer (general audience) Q-CROC7 Hosting and participation at several booths across the Eastern Townships region healthcare centers - Clinical Research Awareness day campaign
Provincial 2019 Expertise Quebec Cancer Coalition15 Advising on patient engagement in oncology
Provincial 2019 Expertise Quebec Cancer Coalition15 Participation to the Annual Meeting, Annual Retreat, Day on political awareness of personalized medicine in oncology, Think Tank on clinical trial repositories, Community of practice “Experience and partnership in care and services”
Provincial 2019 Research CRCHUS1 - Cancer theme The All For One randomised controlled trial was co-designed with a breast cancer patient with a CRCHUS’s researcher (both member of the PPSC2). The idea was from the patient. The proposal was submitted for a CIHR catalyst grant (rejected) and a FRQS patient-priority (rejected) competitions. This project aims to design a patient-provided intervention to improve the quality of care offered to patients during the pre-diagnostic breast cancer period. This project is now being implemented at the national level in partnership with the QBCF.
Provincial 2019 Knowledge transfer (philanthropy partners) Québec Breast Cancer Foundation10 Training offered to QBCF staff on patient engagement: barriers, facilitators and strategies to succeed.
Provincial 2019 Knowledge transfer (scientific patient partners) Unité de SOUTIEN SRAP Québec 13 Member of the Patient Engagement Advisory Board - Contribution to the “Province of Quebec Health Research Patients and Citizen Partners Community of Practices”
Provincial 2020 Research McPeak-Sirois Group6 Co-development of a proposal aimed at implementing a Provincial Breast Cancer Patient-Partner Committee, under the auspice of the GMPS, and local breast cancer patient-partners committees at GMPS participating institutions. The proposal was submitted to the “Quebec Breast Cancer Foundation Education Funds for Cancer $ 1 million initiative” (rejected). Currently, being implemented with the GMPS.
Provincial 2020 Research FRQS-Oncopole5 Member of the Patient Priority’ competition Review Board, which mandate is to define national investment priorities and identify research projects likely to have a positive impact on cancer patients’ experience
National 2017 Expertise Diabetes Action Canada12 The PPSC2 hosted the Diabetes Action Canada - Immigrant Committee Meeting and presented on the PPSC’s vision and objectives.
National 2018 Expertise 3CTN16 Member of the Patient Representative Advisory Committee and participation to the Annual Meeting.
National 2018 Research CRCHUS1 - Mother/Child theme; Cancer theme; Population Health Patient and researcher collaborations to research competitions:
CIHR - Early Career Investigators in Maternal, Reproductive, Child & Youth Health - Operating Grants program (X3 tandem granted and patients named as co-investigators);
CIHR - Project Grant Competition program (× 2 granted, patients named as collaborators);
New Frontiers Research Funds - Exploration competition (× 1 granted, patients named as collaborators).
National 2019 Expertise CIHR9 Participation to the CIHR public consultation on the “CIHR’s Ethical Guidelines for Establishing Research Partnerships with Patients” framework;
National 2019 Research CRCHUS1 Member of Research Study Executive Committees: Epi-STORM (NCT03786991); WeCARE (NCT04254302); 3TMPO (NCT04000776); SOCRATIC (NCT04079764)
National 2019 Knowledge transfer (general audience) Colorectal Cancer Canada17 Hosting and planning of the Giant Colon Tour booth. This event aimed to raise awareness on colorectal cancer and research.
Local Provincial National 2017-2018-2019 Research CRCHUS1 The PPSC supports the CRCHUS’s investigators with letters of support and in-kind supports to local, national and provincial research grant competition applications. Emphasis is put on the supporting infrastructure developed in patient-oriented research to investigators and their patient-partners. In the 3 years covered herein, the PPSC has contributed to 15 letters of supports.
International 2019 Research CRCHUS1 - Population Health theme CIUSSSE – CHUS4 - HSCTIAU 11 Contribution to peer-reviewed original papers on guidelines for sepsis (doi: https://doi.org/10.1136/bmj.k3284) and preference of patients with low back pain (doi: https://doi.org/10.2147/PPA.S201401)
  1. Superscripts 1 to 17 refers to partners’ acronyms and missions, which are defined at Table 1