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 : @patients_udm http://cio.partenaires-de-soins.ca/

PATIENT PARTNERSHIP in research THE KEY QUESTION WHY PATIENT PARTNERSHIP ?

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.

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 * http://pewinternet.org/Reports/2013/Health-online.aspx.

WHY PATIENT PARTNERSHIP? Alignement with population needs

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

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

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

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

WHAT ARE THE ROLES FOR PATIENTS IN RESEARCH AND KT ?

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

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

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

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

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.

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)