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