1. CIHR MODELS OF PATIENT ENGAGEMENT IN RESEARCH Annette Majnemer OT, PhD, FCAHS Director and Associate Dean, School of Physical & Occupational Therapy, Faculty of Medicine Research Associate, Division of Neurology, Montreal Children’s Hospital-McGill University Health Centre

2. E NGAGEMENT OF CITIZENS A CIHR PRIORITY “ CIHR values the engagement of citizens in governance, research priority setting, developing its strategic plans and strategic directions and as an effective means of improving the relevance and translation of research into practice and policy. Ultimately, this will contribute to improving citizens' quality of life, more effective health services and products and a strengthened Canadian health-care system.” http://www.cihr-irsc.gc.ca/e/41293.html

3. C ITIZEN ENGAGEMENT IN RESEARCH Why engage citizens? This engagement is meant to ensure that funded research reflects the needs and values of Canadians Engagement – an active term, meaningful involvement Citizens - interested representatives of the general public, consumers of health services, patients, caregivers, advocates and representatives from affected community and voluntary health organizations The Framework is also guided by five principles: Working with citizens will add value to the program or project Mutual learning and understanding will build trust and credibility Openness will enhance transparency and accountability CIHR will be inclusive in its approach to citizen engagement Citizens will be supported to ensure their full participation http://www.cihr- irsc.gc.ca/e/41293.html

4. P ATIENT ENGAGEMENT : CIHR MODEL research more accountable and transparent provides new insights that could lead to innovative discoveries ensures that research is relevant to patients' concerns

5. C ANADA ' S S TRATEGY FOR P ATIENT -O RIENTED R ESEARCH (SPOR) Goal: Patients, researchers, health care providers and decision-makers actively collaborate to build a sustainable, accessible and equitable health care system and bring about positive changes in the health of people living in Canada http://www.cihr-irsc.gc.ca/e/45851.html Patients = an overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends

7. P ATIENT & FAMILY ENGAGEMENT IN STRATEGIC PATIENT - ORIENTED RESEARCH ( SPOR ): S PORADIC OR STEADY Annette Majnemer OT, PhD, FCAHS Director and Associate Dean, School of Physical & Occupational Therapy, Faculty of Medicine Research Associate, Division of Neurology, Montreal Children’s Hospital-McGill University Health Centre

8. CHILD-BRIGHT Child Health Initiatives Limiting Disability- Brain Research Improving Growth and Health Trajectories

9. CHILD-BRIGHT The CHILD-BRIGHT network will achieve brighter futures for children with developmental disabilities and their families, across the life course, by creating novel interventions to optimize development, promote healthy outcomes, and deliver responsive and supportive services BRIGHT beginnings: We will bring experimental advances to human clinical studies to prevent brain injury and restore brain function to improve the health and well-being of the child and family BRIGHT supports: We will transform outcomes by integrating mental health support into the care of children with BDD who experience behavioural difficulties BRIGHT futures: We will redesign the healthcare system to be more responsive to family needs as their child develops through key transitions in their life-course

10. K EY INGREDIENTS TO CHILD - BRIGHT CHILD-BRIGHT will listen and learn, implement with high impact, working collaboratively with patients and families to ensure brighter futures by supporting children with disabilities and their families to promote resilience and health.

11. C HALLENGES C HALLENGES TO PATIENT / FAMILY ENGAGEMENT : NETWORK PERSPECTIVE Canada is a big country; this challenges engagement of different stakeholders Patients/families ←→ Researchers Most researchers are not comfortable with this Most families are not comfortable with this How best to engage children and youth?

13. S OLUTIONS S OLUTIONS TO PATIENT / FAMILY ENGAGEMENT : NETWORK PERSPECTIVE Build trust and comfort A process, it takes time and patience Must be authentic Face-to-face is really important Build capacity Formal training required Mentorship required (CHILD-BRIGHT patient- oriented training) CIHR, SPOR Support Units (training modules) Multi-pronged approach Capitalize on face-to-face to build relationship Compensate ($) families for their time Start with quick successes Share widely

14. I MPORTANT PARALLELS : LESSONS LEARNED Engaging clinicians in research Same reasons to do it Same challenges Same solutions

15. T AKE HOME MESSAGE It takes time Listen and learn Get the ball rolling