AMPLIFYING OUR COMMUNITYS VOICE PRESENTED BY: Peter - PowerPoint PPT Presentation

AMPLIFYING OUR COMMUNITY’S VOICE PRESENTED BY: Peter Athanasopoulos Executive Director - Ontario SCI Alliance Senior Manager, Public Policy and Government Relations - SCI Ontario Emily Giroux Knowledge Translation Researcher - Ontario SCI Alliance MSc Student - University of British Columbia Okanagan UHN Best Practice Forum - Thursday April 26, 2018

Powerful Partnerships POWERFUL PARTNERSHIPS for Ontarians with Spinal Cord Injuries Community Mobillization Research into Advocacy Practice Capacity Ontario SCI Public Policy Program Research Network Co-led by CO - LED BY • Conducts policy analysis and • Globally renowned, multi-site research SCI clinical research • Engages government • Research and implementation • Oversees Peer Activists collaboration Program SCI Knowledge • Provide strategic advice Mobilization Network • Facilitates information and resource sharing among researchers, service providers, SCI leaders, policymakers and other stakeholders Insurance Bureau of • Implements evidence-based Canada • Coordinates partner activities and initiatives in a strategic fashion Best Practices • Premier Partners • Acts as a network of expertise on spinal cord injury in Ontario • Addresses and resolves systemic barriers that impact Quality of Life

What our Community Achieved • Community Engagement • Synergy and Integration among people 
 with SCI, their families, researchers, 
 service providers, and policy makers • Policy Change • Ideas to put research in practice faster

ONTARIO’S NETWORK OF NETWORKS THE SCI COMMUNITY Community Sexual Participation & Health Employment SCI HIGH People With SCI Urinary Tract Pressure Infection Injuries ONTARIO KNOWLEDGE SCI Community Organizations MOBILIZATION NETWORK Self Management Private Industries PHYSICIAN ENGAGEMENT Bladder NETWORK Health Researchers ONTARIO SCI RESEARCH Wheeled NETWORK Mobility Acute & Rehab Centers Walking ONTARIO Service Providers SCI ALLIANCE Emotional Pain Well Being Management Policy Makers SCI ONTARIO PUBLIC POLICY PROGRAM Reaching, Cardiovascular Grasping & Health Manipulation CROSS Engagement of Research Peer Data People With Lived Implementation CUTTING Training & Activists Management Experience In Spinal Science Mentoring PLATFORMS Cord Injury

SCI-HIGH Mission Statement “Establish a comprehensive framework of structure, process & outcome indicators to improve standards of spinal cord injury rehabilitation in Canada.” This will be accomplished through: Consultation with relevant stakeholders including Accreditation Canada, HSO, RHI, ONF, scientists, health policy makers, leaders, administrators, health care providers and leaders with lived experience in SCI.

DOMAINS Sexual Wheeled Health Mobility Skin Integrity Emotional Well Being Bladder Health Urinary Tract Infection Walking Community Participation & Employment Self Reaching, Management Grasping & Manipulation Cardiovascular Health

Ontario SCI Knowledge Mobilization Network (KMN) M E N T E A L T P I O M N I Implementation Science Science Evidence-Based Service Practices Implementation: Purposeful activities at the practice, program, and system level designed to put into place a program or intervention.

Ontario SCI Knowledge Mobilization Network (KMN) Site Implementation Site Site MANAGEMENT Mentorship DATA Site Site

PHYSICIAN ENGAGEMENT NETWORK

JOIN OUR NETWORK • Connect you to knowledge, expertise, and resources • Access tools and physician support for your patients – Mobility Clinic • Provide direct consult to specialists in spinal cord injury Best Practice • Access our VIP4SCI Application • Advocate for your examining room to be fully accessible • Address gaps in support, like physician billing, 
 with the MOHLTC • Learn about progress we are making under 
 the Patients First Act • Become a member of the Spinal Cord 
 Injury Ontario community

Mobility Clinic THE BEST PRACTICE MODEL IN ONTARIO

Join our Network VIP4SCI PEER SUPPORT PEER EMPLOYMENT CONNECTIONS SERVICES FAMILY & SPINAL CORD CAREGIVERS INJURY ONTARIO YOU RESOURCE CENTRE EXTERNAL FAMILY DOCTOR SUPPORT AND SERVICES REGIONAL MOBILITY CLINIC SERVICE COORDINATOR ACCESS TO REHAB SERVICES (VIA PATIENT PORTAL)

Sci Ontario- Public Policy Program 54 22 00 00 DAYS HOURS MIN SECS ELECTION DAY IN ONTARIO IS JUNE 7, 2018 www.yourmoveontario.ca

COMMUNITY ENGAGEMENT COMMUNITY ENGAGEMENT LEADERSHIP Engagement Engagement Engagement in Engagement Engagement in Media - in Peer SCI Awareness in Peer Clients at Info Other Peer Support & Knowledge Facilitation Sessions Spokespersons Engagement in Research Engagement in Public Policy and Government Relations

Hearing Our Community’s Voice Summit Consensus Survey Results Emily E. Giroux MSc Student, School of Health and Exercise Sciences – University of British Columbia Okanagan Peter Athanasopoulos Executive Director - Ontario SCI Alliance Senior Manager, Public Policy & Government Relations – Spinal Cord Injury Ontario Dr. Shane N. Sweet Assistant Professor, Department of Kinesiology and Physical Education – McGill University Dr. Heather L. Gainforth MSc Supervisor, Assistant Professor, School of Health and Exercise Sciences – University of British Columbia Okanagan

aim • Develop survey to capture the voice of the SCI community • Reach consensus using Delphi Methodology ◦ Primary Care and Community Supports ◦ Neuropathic Pain ◦ Bladder Management ◦ Pressure Injuries

WHAT IS Delphi Methodology? Survey 1 • Evidence-Based Strategies and Supports • Likert Scale (0-10)

WHAT IS Delphi Methodology? Survey 1 ANALYSIS • Evidence-Based • Average Rating Strategies and Supports • At least 8 • Likert Scale (0-10) • Consensus: • 66% • At least 8

WHAT IS Delphi Methodology? Survey 1 ANALYSIS Survey 2 • Evidence-Based • Average Rating • Re-Iterate Survey Strategies and Supports • At least 8 • Present Survey 1 Results • Likert Scale (0-10) • Consensus: • 66% • At least 8

Benefits of Delphi Methodology Self-Administered Equal Group Consideration • Reach across the province Interactions • Overbearing Voices • Positive Attributes • Negative Attributes

WHAT IS Delphi Methodology? Co-Develop Refine Piloting of Consensus Consensus Survey Methods Methods

SURVEY METHODS Disseminate Survey #1 Analyze Survey #1 Disseminate Survey #2 Analyze Survey #2 Develop Action Plan

Results

Participants (Survey 1) • 374 Participants (74% living with SCI) • Average Age: 54.8 years, Gender: 32% women, 26% tetraplegia Role Primary Secondary 13% Live with SCI/Physical Disability 50% 5% Family Member/Friend/Relative 4% 5% SCI Community Service Provider 7% 1% SCI Clinician/Admin (Hospital) 3% 1% 1% SCI Clinician/Admin (Community) SCI Researcher 2% 2% Fund Programs/Develop Policies 1% 1% Other (Primarily Occupations) 32% 38% No Secondary Role -- 34%

Participants (Survey 2) • 118 Participants (74% living with SCI) • Average Age: 54.7 years, Gender: 33% women, 24% tetraplegia Role Primary Secondary 15% Live with SCI/Physical Disability 60% 7% Family Member/Friend/Relative 3% 6% SCI Community Service Provider 8% 2% SCI Clinician/Admin (Hospital) 0% 2% 1% SCI Clinician/Admin (Community) SCI Researcher 2% 3% Fund Programs/Develop Policies 0% 1% Other (Primarily Occupations) 25% 21% No Secondary Role -- 44%

Primary Care

Survey 1 Results – Primary Care 1. Work towards making sure that family doctors’ examining rooms become more accessible. 2. Work with every SCI Rehab Centre to ensure every person with SCI will leave in-patient rehab with a referral to a SCI- informed family doctor. 3. Create a network of family doctors to work together to share their knowledge in order to improve primary care in SCI. 4. Ensure family doctors can make accommodations for visits with people with SCI. 5. Have a SCI-specific best practice clinic (mobility clinic) available to provide knowledge and support to all family doctors serving people with SCI across Ontario. 6. Build a SCI specific manual for doctors. 7. Provide people with SCI information/resources/training that can be given to their family doctor. 8. Ensure family doctors are paid to have longer appointments with people with SCI. 9. Have an online health coach who is a person with SCI assist people with SCI with their health complications. 10. Create a smart-phone app where you can have a video chat with your family doctor.