Patient Partner and Health: Reality and Challenges By Vincent Dumez, patient expert University of Montréal, Faculty of medicine Collaboration and Patient Partnership Unit SMI – November 6th 2014

I EXPERIENCED PATIENT MANAGEMENT CONSULTANT PROJECT DEVELOPER LIVES CONVERGENCE

“ A KEY ACTOR IS MISSING IN THE CREATIVE PROCESS OF A STRUGGLING HEALTH SYSTEM “ Dean Faculty of medicine, 2010

POPULATION IS STRUGGLING 50% + of western countries’ populations suffer from at least one chronic disease : POPULATION IS STRUGGLING IN THIS ROOM, HALF OF THE PUBLIC HAS A CHRONIC DESEASE WE ARE A SICK POPULATION

50 to 80% of these patients don’t properly respect their prescriptions : INDIVIDUALS ARE STRUGGLING WHY INTELLIGENT PEOPLE DON’T RESPECT THEIR TREATMENT ? NOT A QUESTION OF RESPONSABILITY, BUT A QUESTION OF EMPOWERMENT CAPACITY TO HELP THOSE PEOPLE TO TAKE CARE OF THEMSELVES

80% + of patients search online for health-related information But even with this easy access WE ARE STILL STRUGGLING WHY DO THEY LOOK SYSTEMACALLY FOR THS KIND OF BROAD INFORMATION ? BECAUSE THEY DON’T HAVE ACCESS TO STRUCTURED AND ADAPTED INFORMATION THROUGH THEIR CARE TEAM BECAUSE THEY DON’T UNDERSTAND AND THEY LOOK FOR ANSWERS

NOT SO MUCH TIME IN THE END  5-10 hours = Average ANNUAL TIME spent by chronic patients with their health professionals NOT SO MUCH TIME IN THE END 

Therefore ignoring huge amounts of valued EXPERIENCE BASED KNOWLEDGE 6000+ hours = average ANNUAL TIME spent by chronic patients + families for their own care Therefore ignoring huge amounts of valued EXPERIENCE BASED KNOWLEDGE

« PUSHING SOLUTIONS » MODE Stuck in paternalism PATIENTS OUTSIDE EXPERTS THINKING FOR THEM PUSHING SOLUTIONS REINFORCEMENT OF PASSIVE POSITION OF THE PATIENT OBVIOUS, NO ? « PUSHING SOLUTIONS » MODE

CO-BUILDING FROM EXPERIENCE Move to partnership LIVING WITH AN ILLNESS EXPERTS DISEASE HEALTH PROFESSIONALS PATIENTS CO-BUILDING FROM EXPERIENCE TO RENEW HEALTH SYSTEM DO WITH THE PATIENT PATIENT INSIDE THE EXPERTISE CIRCLE CONSIDER AS AN ACTOR OF CARE FULL PART OF A CO-BUILDING DYNAMIC FULL PART OF THE SUCCESS OF THE CARE PROCESS WE CAN’T DO WITHOUT PATIENTS A NEW PARADIGM TO RENEW A STRUGGLING SYSTEM WITH NO SOLUTION A CREATIVITY PARTNER

CHANGE IN HEALTH SCIENCES EDUCATION : STRENGTHEN HUMANITIES CURRICULUM CHANGE IN HEALTH CARE AND SERVICES : STRENGTHEN PARTNERSHIP IN CARE CHANGE IN RESEARCH : STRENGTHEN POPULATION NEED FOCUS

TOWARD A PARTNERSHIP IN HEALTH SCHOOL « MONTREAL MODEL »   PARTNERING IN HEALTH EDUCATION +120 patients-as-trainers PROGRAMS TRANSFORMATION STUDENTS TRAINING / MENTORING CO-LEAD UNIT PATENT EXPERTS RESEARCHERS HEALTH PROFESSIONALS HEALTH MANAGERS TOWARD A PARTNERSHIP IN HEALTH SCHOOL PARTNERING IN CARE +75 patients-as-advisors QUALITY IMPROVMENT & GOVERNANCE PUBLIC POLICY ENHANCEMENT PARTNERING IN RESEARCH +5 patients-as-researchers RESEARCH GOVERNANCE RESEARCH RELEVANCE & TRANSLATION DEDICATED TO CO-BUILDING AND CREATIVITY FROM EXPERIENCES FIELDS OF EXPERIMENTATION UNDERSTANDING PARTNERSIP IN DIFFERENT WAYS UNDERSTANDING RULES OF ENGAGEMENT HOW TO CREATE TOGETHER

Twitter @patients_udm