CENTRE OF EXCELLENCE ON PARTNERSHIPWITH PATIENTS AND THE PUBLIC

1. CENTRE OF EXCELLENCE ON PARTNERSHIPWITH PATIENTS AND THE PUBLIC PATIENT PARTNERSHIP IN HEALTH CARE A NECESSARY TRANSITION Vincent Dumez, M.Sc., patient, co-director

2. CONFLICTS OF INTEREST NONE TO DECLARE

3. THE EXPERTISE OF LIVING WITH AN ILLNESS • PARTNERSHIP • CRISIS • ACTIVISM • ANALYSIS • PREVENTION • TRANSFORMATION

4. THE BIRTH OF THE MONTREAL MODEL • IT BEGAN IN 2010 • SHARED VISION OF A DEAN OF A FACULTY OF MEDICINE AND AN EXPERIENCED PATIENT • CREATION OF THE PATIENT PARTNER OFFICE – FIRST IN THE WORLD • DEPLOYMENT IN MEDICAL & HEALTH SCIENCES EDUCATION WITH A SPECIFIC FOCUS ON COLLABORATION • DEPLOYMENT IN HEALTH INSTITUTIONS WITH A SPECIFIC FOCUS ON QUALITY IMPROVEMENT • DEPLOYMENT IN RESEARCH WITH A SPECIFIC FOCUS ON GOVERNANCE

5. « THE MONTREAL MODEL »AN EMERGING EXPERTISE CO-LEAD UNIT • PARTNERING IN HEALTH EDUCATION • + 10 education programs • PROGRAM TRANSFORMATIONS (MD- • TRAINING OF STUDENTS • MENTORING OF STUDENTS EXPERT PATIENTS RESEARCHERS • PARTNERING IN CARE • + 25+ health care institutions • HEALTH CARE QUALITY IMPROVEMENT • HEALTH GOVERNANCE • PUBLIC POLICY DEVELOPMENT CENTRE OFEXCELLENCE HEALTHMANAGERS HEALTHPROFESSIONALS • PARTNERING IN RESEARCH • +10 national research networks • RESEARCH GOVERNANCE • RESEARCH CO-DESIGN • RESEARCH TRANSLATION DEDICATEDTO CO-BUILDINGAND PATIENT PARTNERSHIP

6. PARTNERSHIP PATIENT: BUILDING ON EXPERIENCES A historical trend... An emerging expertise… Participatory Research Science & technology Patient Centered Care Self-Management Shared Decision Making Knowledge Translation

7. ONE QUESTION : A 4-PART STORY WHY ARE PATIENTS AND FAMILIES UNAVOIDABLE PARTNERS IN CARE ?

8. NOT ONLY CUSTOMERS… PATIENTS AND FAMILIES ARE NOT ONLY CUSTOMERS BUT ALSO PRODUCERS OF CARE 1

9. EXPERIENCED PATIENTS INADEQUATE CARE SETTINGS >50% of the population in western countries suffer from at least one chronic disease

10. PATIENTS AS ACTORS OF CARE INFORMED DECISIONMAKING EXPERIENCE-BASED KNOWLEDGE CARE SKILLSDEVELOPMENT FULL MEMBER OF THECARE TEAM FOCUS ON LIFE PROJECT TO THE PATIENT FOR THE PATIENT WITH THE PATIENT CO-BUILDING CO-LEADERSHIP PARTNERSHIP INFORMING CONSULTING INVOLVEMENT

11. NOT ONLY TAKEN IN CHARGE… PATIENTS AND FAMILIES ARE NOT ONLY EXPRESSING NEEDS BUT THEY ARE ALSO OWNERS OF A RICH KNOWLEDGE 2

12. LIMITED TIME SPENT WITH PATIENTS IN CLINICAL SETTINGS 5-10 hours = average annual time spent by patients with chronic diseases with their health care professionals *EngagingPatients in Healthcare by Angela Coulter

13. LOTS OF TIME SPENT BY PATIENTS AND FAMILIES IN SELF-MANAGEMENT 6000+ hours = average annual time spent by patients with chronic diseases and families for their own care *EngagingPatients in Healthcare by Angela Coulter

14. A SPECIFIC EXPERTISE: FOUNDATION OF LEGITIMACY DISEASE EXPERTS EXPERTS IN LIVING WITH AN ILLNESS SHAREDVALUES ACKNOWLEDGEDCOMPLEMENTARITY HEALTH PROFESSIONALS & RESEARCHERS PATIENTS CO-BUILDING & CO-LEADERSHIP

15. IMPROVEMENT USUALLY PRIORITIZED BY PATIENTS AND FAMILIES • Autonomy • Identification and validation of treatment options with the patient • Integration of the patient's life context in clinical reasoning • Empathy and emotional intelligence • Negotiating treatment options depending on the patient's life project • Information to the patient and validation of his understanding of his health problems • Development of patient care skills • Patient empowerment in its choices EVOLUTION TOWARDS PARTNERSHIP IN CARE FROM PATERNALISM TO PARTNERSHIP • Diagnosis announcement • Self-managementcapacity LEVEL OF PARTNERSHIP AND PATIENT INTEGRATION IN CARE

16. IMPROVEMENTS ARE A MUST 50 to 70 % of patients with chronic condition don’t properly respect their prescriptions

17. NOT ONLY USERS… PATIENTS AND FAMILIES ARE NOT ONLY SERVICE USERS BUT ALSO EXPERIENCED PLAYERS / OBSERVERS OF OUR HEALTHCARE SYSTEMS 3

18. PATIENTS HAVE A UNIQUE AND ESSENTIAL VIEW OF THE SYSTEM PATIENT JOURNEY VIEW • HOSPITALO CENTRIC VIEW I FEEL BAD… I’M HAPPY 

19. RESEARCH : A HUGE GAP BETWEEN PERSPECTIVES

20. A CULTURAL MOVEMENT ON THE RISE… PATIENTS AND THEIR FAMILIES ARE MORE AND MORE ‘CONNECTED’ AND ARE DEVELOPING REFLEXIVE CAPACITIES THAT ARE INCREASINGLY IMPORTANT 4

21. ALREADY CONNECTED 70 % of patients search online for health-related information before meeting their healthcare professional

22. ANOTHER ELEPHANT IN THE ROOM! PRESSURE ON CLINICAL PRACTICES It’s just the beginning of a trend that will transform the paradigm « Dr. Google » Personalized Medicine Blogs, social media, etc. Apple Watch & Co. Sophisticated Monitoring Tools Telehealth

23. HOW TO MOVE FORWARD ?

24. INDISPENSIBLE AGENTS OF CHANGE AND INNOVATION Partnership Co-leadership Consult Implicate Inform Patient Partners PARTICIPATION IN CARE/CLINIC v IN GOVERNANCE • Quality • Organization • Health Policy Statistics Data Perceptions Opinions Experiential Knowledge IN RESEARCH IN EDUCATION Inspiré de «  At the Intersection of Health, Health Care and Policy «, Kristin L. Carman, Pam Dardess, Maureen Maurer, ShoshannaSofaer, Karen Adams, Christine Bechtel and Jennifer Sweeny, Patient and family, Developing Interventions And PoliciesHealthAffairs, 32, no.2 (2013):223-231

25. IT IS TIME TO IMPLICATE PATIENTS AT THE RIGHT STAGE IN THE RIGHT WAY • ENGAGEMENT DANS LA QUALITÉ DE L’EXPÉRIENCE DE SOINS ET SERVICES : • EN AMONT • EN CONTINU • DÉCISION PARTAGÉE • CO-LEADERSHIP • CO-CONSTRUCTION PARTENARIAT Participation Patients Professionals Consultation Information Confrontation Boivin, Dumez, Gauvin, Lebel, 2015

26. TWO NECESSARY APPROACHES, ONE ESSENTIAL DISTINCTION

27. MANAGING A MAJOR CULTURAL CHANGE GOVERNANCE DEVELOP A CULTURE OF PARTNERSHIP STRUCTURE PATIENT ENGAGEMENT MANAGEMENT PROCESS/PROGRAMMATION DEPLOY A VISION OF PARTNERSHIP IN HEALTH HEALTH ORGANIZATION

28. OUR MISSION To support the practice and science of partnershipbetween patients, professionals and the public AN INTERNATIONAL NETWORK IN DEVELOPMENT

29. OUR PARTERS