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

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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

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for Ontarians with Spinal Cord Injuries

POWERFUL PARTNERSHIPS

Community Mobillization Research into Practice

Co-led by

Advocacy Capacity

Ontario SCI Research Network

Globally renowned, multi-site

SCI clinical research

Research and implementation

collaboration SCI Knowledge Mobilization Network

Implements evidence-based

Best Practices Public Policy Program

Conducts policy analysis and

research

Engages government
Oversees Peer Activists

Program

Provide strategic advice

Insurance Bureau of Canada

Premier Partners

CO-LED BY

Facilitates information and resource sharing among researchers,

service providers, SCI leaders, policymakers and other stakeholders

Coordinates partner activities and initiatives in a strategic fashion
Acts as a network of expertise on spinal cord injury in Ontario
Addresses and resolves systemic barriers that impact Quality of Life

Powerful Partnerships

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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

What our Community Achieved

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ONTARIO’S NETWORK OF NETWORKS

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

CROSS

CUTTING

PLATFORMS

Peer Activists Implementation Science Data Management

THE SCI COMMUNITY

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“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.

SCI-HIGH Mission Statement

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DOMAINS

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

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Ontario SCI Knowledge Mobilization Network (KMN)

Science Evidence-Based Practices Implementation Science Service

I M P L E M E N T A T I O N

Implementation: Purposeful activities at the practice, program, and system level designed to put into place a program or intervention.

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Ontario SCI Knowledge Mobilization Network (KMN)

Site Site Site Site Site Mentorship Implementation MANAGEMENT DATA

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PHYSICIAN ENGAGEMENT NETWORK

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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

JOIN OUR NETWORK

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THE BEST PRACTICE MODEL IN ONTARIO

Mobility Clinic

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Join our Network

VIP4SCI

EMPLOYMENT SERVICES PEER SUPPORT PEER CONNECTIONS FAMILY & CAREGIVERS FAMILY DOCTOR MOBILITY CLINIC REGIONAL SERVICE COORDINATOR EXTERNAL SUPPORT AND SERVICES SPINAL CORD INJURY ONTARIO RESOURCE CENTRE

YOU

ACCESS TO REHAB SERVICES (VIA PATIENT PORTAL)

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Sci Ontario- Public Policy Program

ELECTION DAY IN ONTARIO IS JUNE 7, 2018

www.yourmoveontario.ca

54

22 00 00

DAYS HOURS MIN SECS

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COMMUNITY ENGAGEMENT

LEADERSHIP

Engagement in Media - Peer Spokespersons Engagement in Peer Support Engagement in Peer Facilitation Engagement in SCI Awareness & Knowledge Clients

Engagement in Research Engagement in Public Policy and Government Relations

COMMUNITY ENGAGEMENT

Engagement at Info Sessions Other

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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

Hearing Our Community’s Voice Summit Consensus Survey Results

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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

aim

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Survey 1

Evidence-Based

Strategies and Supports

Likert Scale (0-10)

WHAT IS Delphi Methodology?

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Survey 1

Evidence-Based

Strategies and Supports

Likert Scale (0-10)

ANALYSIS

Average Rating
At least 8
Consensus:
66%
At least 8

WHAT IS Delphi Methodology?

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Survey 1

Evidence-Based

Strategies and Supports

Likert Scale (0-10)

ANALYSIS

Average Rating
At least 8
Consensus:
66%
At least 8

Survey 2

Re-Iterate Survey
Present Survey 1 Results

WHAT IS Delphi Methodology?

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Self-Administered

Reach across the province

Equal Consideration

Overbearing Voices

Group Interactions

Positive Attributes
Negative Attributes

Benefits of Delphi Methodology

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WHAT IS Delphi Methodology?

Piloting of Survey Refine Consensus Methods Co-Develop Consensus Methods

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

SURVEY METHODS

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Results

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374 Participants (74% living with SCI)
Average Age: 54.8 years, Gender: 32% women, 26% tetraplegia

Participants (Survey 1)

Role Primary Secondary

Live with SCI/Physical Disability 50%

13%

Family Member/Friend/Relative 4%

5%

SCI Community Service Provider 7%

5%

SCI Clinician/Admin (Hospital) 3%

1%

SCI Clinician/Admin (Community)

1% 1% SCI Researcher 2% 2% Fund Programs/Develop Policies 1% 1% Other (Primarily Occupations) 32% 38% No Secondary Role

34%

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118 Participants (74% living with SCI)
Average Age: 54.7 years, Gender: 33% women, 24% tetraplegia

Participants (Survey 2)

Role Primary Secondary

Live with SCI/Physical Disability 60%

15%

Family Member/Friend/Relative 3%

7%

SCI Community Service Provider 8%

6%

SCI Clinician/Admin (Hospital) 0%

2%

SCI Clinician/Admin (Community)

2% 1% SCI Researcher 2% 3% Fund Programs/Develop Policies 0% 1% Other (Primarily Occupations) 25% 21% No Secondary Role

44%

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Primary Care

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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.

Survey 1 Results – Primary Care

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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.

Survey 1 Results – Primary Care

Met Delphi Criteria Did Not Meet Delphi Criteria

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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.

Survey 2 Results – Primary Care

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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.

Survey 2 Results – Primary Care

Met Delphi Criteria

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Neuropathic Pain

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1. Provide regular informational or educational sessions for people with SCI on pain management. 2. Improve medical coverage/benefits to manage neuropathic pain. 3. Improve access to non-medication forms of treatment for neuropathic pain (e.g. exercise, meditation) across Ontario. 4. Advocate for research funding for improving neuropathic pain. 5. Create a national network of pain specialists across Canada to work towards developing solutions related to neuropathic pain. 6. Develop online pain resources for managing neuropathic pain. 7. Investigate pain strategies involving marijuana in the SCI population. 8. Create a smart-phone app where you can have a video chat with a pain specialist.

Survey 1 Results – Neuropathic Pain

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1. Provide regular informational or educational sessions for people with SCI on pain management. 2. Improve medical coverage/benefits to manage neuropathic pain. 3. Improve access to non-medication forms of treatment for neuropathic pain (e.g. exercise, meditation) across Ontario. 4. Advocate for research funding for improving neuropathic pain. 5. Create a national network of pain specialists across Canada to work towards developing solutions related to neuropathic pain. 6. Develop online pain resources for managing neuropathic pain.        7. Investigate pain strategies involving marijuana in the SCI population. 8. Create a smart-phone app where you can have a video chat with a pain specialist.

Survey 1 Results – Neuropathic Pain

Met Delphi Criteria Did Not Meet Delphi Criteria

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1. Improve medical coverage/benefits to manage neuropathic pain. 2. Improve access to non-medication forms of treatment for neuropathic pain (e.g. exercise, meditation) across Ontario. 3. Create a national network of pain specialists across Canada to work towards developing solutions related to neuropathic pain. 4. Advocate for research funding for improving neuropathic pain. 5. Provide regular informational or educational sessions for people with SCI on pain management. 6. Develop online resources for managing neuropathic pain.

Survey 2 Results – Neuropathic Pain

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1. Improve medical coverage/benefits to manage neuropathic pain.

2. Create a national network of pain specialists across Canada to work towards developing solutions related to

neuropathic pain. 3. Advocate for research funding for improving neuropathic pain. 4. Provide regular informational or educational sessions for people with SCI on pain management. 5. Improve access to non-medication forms of treatment for neuropathic pain (e.g. exercise, meditation) across Ontario.

6. Develop online resources for managing neuropathic pain.

Survey 2 Results – Neuropathic Pain

Met Delphi Criteria

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BLADDER MANAGEMENT

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1. Have the provincial government set up a new funding program for bladder management supplies for people with SCI (e.g. catheters, leg bags). 2. Advocate for research funding for bladder management strategies.

3. Build a national network of SCI bladder management specialists to further develop solutions for problems related to SCI bladder complications. 4. Improve medical coverage/benefits for bladder management medications. 5. Develop education or training for adults with SCI on prevention and complications of SCI bladder management. 6. Ensure family doctors take a course on SCI bladder management if they are working with someone with SCI. 7. Have an online health coach who is a person with SCI assist people with SCI with bladder management. 8. Create a smart-phone app where you can have a video chat with a bladder care specialist.

Survey 1 Results – Bladder Management

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1. Have the provincial government set up a new funding program for bladder management supplies for people with SCI (e.g. catheters, leg bags, etc;) 2. Improve medical coverage/benefits for bladder management complications. 3. Develop education or training for adults with SCI on prevention and complications of SCI bladder management. 4. Build a national network of SCI bladder management specialists to further develop solutions for problems related to SCI bladder complications. 5. Advocate for research funding for bladder management strategies. 6. Ensure family doctors take a course on SCI bladder management if they are working with someone with SCI. 7. Have an online health coach who is a person with SCI assist people with SCI with bladder management.    8. Create a smart-phone app where you can have a video chat with a bladder care specialist.

Survey 1 Results – Bladder Management

Met Delphi Criteria Did Not Meet Delphi Criteria

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1. Have the provincial government set up a new funding program for bladder management supplies for people with SCI (e.g. catheters, leg bags, etc;) 2. Improve medical coverage/benefits for bladder management complications. 3. Develop education or training for adults with SCI on prevention and complications of SCI bladder management. 4. Build a national network of SCI bladder management specialists to further develop solutions for problems related to SCI bladder complications. 5. Advocate for research funding for bladder management strategies. 6. Ensure family doctors take a course on SCI bladder management if they are working with someone with SCI. 7. Have an online health coach who is a person with SCI assist people with SCI with bladder management.

Survey 2 Results – Bladder Management

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1. Have the provincial government set up a new funding program for bladder management supplies for people with SCI (e.g. catheters, leg bags, etc;) 2. Improve medical coverage/benefits for bladder management complications. 3. Build a national network of SCI bladder management specialists to further develop solutions for problems related to SCI bladder complications. 4. Develop education or training for adults with SCI on prevention and complications of SCI bladder management. 5. Advocate for research funding for bladder management strategies. 6. Ensure family doctors take a course on SCI bladder management if they are working with someone with SCI.    7. Have an online health coach who is a person with SCI assist people with SCI with bladder management.

Survey 2 Results – Bladder Management

Met Delphi Criteria Did Not Meet Delphi Criteria

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PRESSURE INJURIES

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1. Work with health authorities to ensure people are being treated for pressure injuries the same way, regardless of where they live. 2. Have regular education sessions for health care providers, adults with SCI, caregivers, etc; on treating and preventing pressure injuries. 3. Have an online health coach who is a person with SCI to assist people with SCI with preventing and treating pressure injuries. 4. Advocate for research funding for pressure injury prevention and treatment. 5. Make seat assessments for people using wheelchairs equally available for all people with SCI. 6. Increase the role of personal support workers/attendants in pressure injury management (e.g pressure injury prevention and treatment). 7. Advocate for electric stimulation therapy as a government-funded pressure injury treatment. 8. Create a smart-phone app where you can have a video chat with a pressure injury specialist.

Survey 1 Results – PRESSURE INJURIES

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1. Make seat assessments for people using wheelchairs equally available for all people with SCI. 2. Work with health authorities to ensure people are being treated for pressure injuries the same way, regardless of where they live. 3. Increase the role of personal support workers/attendants in pressure injury management   (e.g. pressure injury prevention and treatment) 4. Have regular education sessions for health care providers, regardless of where they live. 5. Advocate for electric stimulation therapy as a government-funded pressure injury treatment option. 6. Advocate for research funding for pressure injury prevention and treatment. 7. Have an online health coach who is a person with SCI to assist people with SCI in preventing and treating injuries.  8. Create a smart-phone app where you can have a video chat with a pressure injury specialist.

Survey 1 Results – PRESSURE INJURIES

Met Delphi Criteria Did Not Meet Delphi Criteria

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1. Make seat assessments for people using wheelchairs equally available for all people with SCI. 2. Work with health authorities to ensure people are being treated for pressure injuries the same way, regardless of where they live. 3. Increase the role of personal support workers/attendants in pressure injury management (e.g. pressure injury prevention and treatment) 4. Have regular education sessions for health care providers, regardless of where they live. 5. Advocate for electric stimulation therapy as a government-funded pressure injury treatment option. 6. Advocate for research funding for pressure injury prevention and treatment. 7. Have an online health coach who is a person with SCI to assist people with SCI in preventing and treating injuries.

Survey 2 Results – PRESSURE INJURIES

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1. Make seat assessments for people using wheelchairs equally available for all people with SCI. 2. Work with health authorities to ensure people are being treated for pressure injuries the same way, regardless of where they live. 3. Advocate for research funding for pressure injury prevention and treatment. 4. Have regular education sessions for health care providers, regardless of where they live. 5. Increase the role of personal support workers/attendants in pressure injury management   (e.g. pressure injury prevention and treatment). 6. Advocate for electric stimulation therapy as a government-funded pressure injury treatment option.      7. Have an online health coach who is a person with SCI to assist people with SCI in preventing and treating injuries.

Survey 2 Results – PRESSURE INJURIES

Met Delphi Criteria Did Not Meet Delphi Criteria

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NEXT STEPS

Ontario SCI Alliance Retreat - April 13th, 2018
Publish Survey & Retreat Evaluation
Develop Report & 3-year Action Plan
Develop Operational Plan for the Alliance

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QUESTIONS

CO-LED BY IN PARTNERSHIP WITH