1. TYPE OF ENGAGEMENT AND CHALLENGES
PATIENT PARTNERSHIP
IN RESEARCH
TYPE OF ENGAGEMENT AND CHALLENGES
1st National KT Conference in Rehabilitation- May 4-5, 2016
Vincent Dumez, M.Sc. Patient partner Co-director, Collaboration and Patient Partnership, Faculty of medicine
MAY 2016
Twitter

2. PATIENT PARTNERSHIP in research THE KEY QUESTION
WHY PATIENT PARTNERSHIP ?

3. WHY PATIENT PARTNERSHIP? PUBLIC HEALTH PERSPECTIVE
50% +
of western countries’ populations suffer from at least one chronic disease*
From acute car to chronic care
* Résultats de l’enquête sur la santé dans les collectivités canadiennes (ESCC) 2005.

4. WHY PATIENT PARTNERSHIP? PUBLIC HEALTH PERSPECTIVE
70 %
of patients search online for health-related information*
But even with this easy access they are still struggling *

5. WHY PATIENT PARTNERSHIP? Alignement with population needs

6. PATIENT PARTNERSHIP in research THE KEY QUESTION
DO PATIENTS HAVE A VALUABLE KNOWLEDGE ?
DO THEY NEED TO KNOW ABOUT RESEARCH ?

7. PATIENT PARTNERSHIP in research The « Montreal model »
Paternalism
Patient Centered care
Partnership of care
INFORMING
CONSULTING
INVOLVEMENT
CO-BUILDING
CO-LEADERSHIP

8. PATIENT PARTNERSHIP in research Core assumptions
DISEASE
EXPERTS
LIVING WITH AN ILLNESS
EXPERTS
Co-building
Co-leadership
HEALTH PROFESSIONALS
PATIENTS
ACKNOWLEDGED COMPLEMENTARITY

9. WHY PATIENT PARTNERSHIP? Patient as an actor of care
The majority of care is delivered by patients and relatives

10. WHAT ARE THE ROLES FOR PATIENTS IN RESEARCH AND KT ?

11. PATIENT ENGAGEMENT in research continuum of engagement
Partnership
Participation
Professional
Leadership
Patient/public
Leadership
Consultation
Information
Confrontation

12. PATIENT PARTNERSHIP in research ROLES AND Responsibilities
Setting research priorities
Contributing to research funding evaluation process
Conducting and developing research projects
Interpreting results of research
Participating to the communication, promotion and application of research findings to clinicians, the public and decision makers
Evaluating research process and impact
Contribute to knowledge translation

13. PATIENT engagement strategy an integrated strategy
GOVERNANCE LEVEL
NETWORK ORIENTATIONS
TACTICAL LEVEL
PROJECT EVALUATION
OPERATIONAL
LEVEL
RESEARCH AND KNOWLEDGE TRANSLATION
RESEARCH DESIGN
RESEARCH EXECUTION
PATIENT PARTNERSHIP EXPERTISE
PATIENT PARTNER RECRUITEMENT
PATIENT PARTNERSHIP TRAINING & COACHING

14. PATIENT PARTNERSHIP in research POTENTIAL PATIENT ROLES IN KT
KT TO HEALTHCARE SYSTEM PROFESSIONALS & DECISION MAKERS
RESEARCH PROCESS
KT TO PATIENTS & POPULATION
KT OF PATIENT & POPULATION PERSPECTIVES
KT OF PATIENT EXPERIENCES

15. PATIENT PARTNERSHIP in research NEVER WITHOUT THE PATIENTS
KT OF PATIENT & POPULATION PERSPECTIVES
Ex : co-building of orientations and research protocols
KT OF PATIENT EXPERIENCES
Ex : patients integrated in the project team and activities for their expertise of living with the disease
KT TO PATIENTS & POPULATION
Ex : dissemination with patients of research results & knowledge through education and large scale communication activities
KT TO HEALTHCARE SYSTEM PROFESSIONALS & DECISION MAKERS
Ex : dissemination withpatients of research results & knowledge through clinical setting activities, HC conference, etc.

16. PATIENT PARTNERSHIP in research CIHR initiatives
Canadian Research Chair on Patient and Public partnership (Dr. Antoine Boivin)
Strategy for Patient Oriented Research (SPOR)
CIHR/SPOR Patient Engagement Framework
CIHR/SPOR Provincial SUPPORT Units
Initial and continuous training for health partners (patients, researchers, clinicians, etc.) – CANet, CNTRP, SLEEP, C-SPIN, CanVECTOR, CHRONIC PAIN, CCCTG, etc.
Evaluation tools (process + outcomes) (on going)