Learn More about 
 Patient-Researcher Partnership 

In May 2016, the CNTRP officially created the new CNTRP Patient Partnership Platform (Core 4), following over a year and a half of planning, preparation and consultation.  The Core 4 team is co-led by Marie-Chantal Fortin (CRCHUM) and Sylvain Bédard (patient - CEPPP).​

The overall objectives of Core 4 are to:

  • give the patient a voice and be a catalyst for cultural transformation;

  • align CNTRP priorities and activities to ensure that the CNTRP remains relevant to the needs of patients;

  • contribute proactively to the design and implementation of the patient‑research partnership strategy;

  • play an active and positive role as knowledge transfer channels;

  • advise the executive committee on any changes to strategy, policies and/or programs designed to improve the network’s patient partnership.


 

Specific objectives:

 

 Alignment of CNTRP priorities and research activities with the needs of Canadian patients and their families

  • Engage patients in the definition of research priorities in solid organ transplantation (SOT), bone marrow transplantation (BMT) and organ donation (OD)

  • Facilitate the dialogue between researchers, the CNTRP structure and patients.

  • Assess the impact of defining research priorities with patients on future research projects.

 

Deployment of the patient-partnership strategy within the CNTRP

  • Integration of patient as research partners and research co-leads in different CNTRP project and studies;

  • Development of training materials to help researchers and patients to work together;

  • Development of materials to help researchers define their needs for patient partners;

  • Assessment of the patient-partnership activities.

Achievements:

 

As of Nov 2017, 7 patient partners are involved in the following CNTRP Projects:

  • Increasing solid organ and hematopoietic cell donation (Project 2)

  • Understanding, predicting and preventing early graft rejection and GVHD (Project 3)

  • Predicting and controlling viral complications of transplantation (Project 5)

  • Improving outcomes for transplant recipients (Project 7)

 

In order to help patients and researchers working together, we have developed different materials:

  • Terms of references for patients and researchers;

  • A patient compensation policy;

  • A patient profile form to help researchers define the characteristics of the patient for their research project.

 

We have also provide to members of Core 4 different training sessions:

  • Webinars:

    • Introduction to Core 4 and patient-researcher partnership

    • Patient-researcher partnership within the CNTRP

    • Patient Partnership: Exploring the Evaluation Process and Tools

    • Update and patient compensation policy

  • Half day workshop during the annual meeting of the CNTRP

    • Foundations of partnership in healthcare

    • Discussion of Core 4 Terms and References

    • What is research?

    • Exploring the process of partnership in research

 

During the next year, we plan to:

  • Develop a website in order to facilitate knowledge transfer and knowledge dissemination about patient partnership in research within the CNTRP;

  • Expand the integration of patient as research partners and research co-leaders within different studies and CNTRP projects;

  • To refine the assessment tools developed.

  • Develop training materials based on researchers’ and patients’ needs on patient partnership in research.

  • To look at the ethical issues related to patient-researcher partnership in research.

  • To consolidate our collaboration with the CEPPP and other researchers in the field of patient-researcher partnership in Canada.

 

Publications:

Allard J, Durand, C, Anthony S, Dumez V, Hartell D, Hébert MJ, West L, Wright L, Fortin M-C. Perspectives of patients, caregivers and researchers on research priorities on donation and transplantation in Canada: A pilot workshop. Transplantation Direct, 2017: 3(2), e127. Available at http://journals.lww.com/transplantationdirect/Abstract/2017/02000/Perspectives_of_Patients,_Caregivers_and.1.aspx

 

Ballesteros F, Allard J, Durand C, Cardinal H, Lalonde L, Fortin M-C. Kidney transplant recipients’ perspectives on cardiovascular disease and related risk factors following transplantation: A qualitative study. Transplantation Direct, 2017 : 3(6) : e162. Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464781/

Marie-Chantal Fortin

(CRCHUM)

Sylvain Bédard

(Patient - CEPPP)

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