Model Systems Knowledge Translation Center (MSKTC) Applying Knowledge Translation Strategies to Develop Free Evidenced-Based Resources in SCI and TBI Xinsheng “Cindy” Cai, Ph.D. MSKTC Co-Project Director March 9, 2018 www.MSKTC.org

Agenda What is the MSKTC? What is knowledge translation (KT)? How does the MSKTC apply KT when developing research-based consumer resources? What are the various types of MSKTC resources? How can MSKTC resources benefit you? Open discussion Source: www.msktc.org

Model Systems Knowledge Translation Center (MSKTC) www.msktc.org Source: www.msktc.org

Goals of MSKTC www.msktc.org Enhance the relevance and visibility of Model Systems research Communicate Model Systems research effectively to stakeholders

Audiences Individuals with SCI, TBI, and Burn and Their families Practitioners and Clinicians Policymakers and Advocacy Organizations Researchers

Model Systems 14 SCI Model System Centers with 1 Data Center 16 TBI Model System Centers with 1 Data Center 4 Burn Model System Centers with 1 Data Center Funded by National Institute on Disability, Independent Living, and Rehabilitation Research, Administration for Community Living, US Department of Health and Human Services

Knowledge Translation (KT) Defined KT is defined as the exchange, synthesis and ethically- sound application of knowledge—within a complex system of interactions among researchers and users—to accelerate the capture of the benefits of research . . . —Canadian Institutes of Health Research

MSKTC KT “Explained” Knowledge translation engages consumers throughout the research process—from planning to execution to follow-up—in order to promote findings that are meaningful, relevant, understandable, and accessible. —MSKTC Approach

Knowledge to Action Framework

Applying KT in Developing MSKTC Resources Understanding consumer needs Clear purpose Empowerment and decision making Managing emotional impact Plain language writing Clear organization Images to enhance comprehension Consumer testing Model Systems researchers’ input and approval Spanish translation

KT Toolkit

Example KT Tools on Communicating with Patients and Families

Example KT Tools on Social Media

Examples of SCI Resource Topics Pressure Sores Sexuality & SCI Pregnancy after SCI Bowel & Bladder Managing Pain Wheelchair & Safe Transfer Driving after SCI Adaptive Sports Employment after SCI

Examples of TBI Resource Topics Alcohol & TBI Fatigue & TBI Vision Problems After TBI Depression & TBI Severe TBI Relationships After TBI Driving after TBI Sleep & TBI Headaches after TBI

Variety of Free Research-based Resources Factsheets Facts and figures Narrated slideshows Videos Podcast Hot topic modules Quick reviews KT toolkit Systematic reviews Publication database

Facts & Figures Source: www.msktc.org

TBI Policy Factsheet Source: www.msktc.org

Factsheets Source: www.msktc.org

Infocomics

Podcast Briefs

Narrated Slideshows Source: www.msktc.org

Video Products Source: www.msktc.org 2 minute Don’t Let Your Bowels Control You: http://www.msktc.org/sci/Hot-Topics/Bowel_Function/Bowels-Control-You Time: 2:52 Dating and Sex: http://www.msktc.org/sci/Hot-Topics/Bowel_Function/Dating-And-Sex Time: 1:46 Medications, Techniques, and More: http://www.msktc.org/sci/Hot-Topics/Bowel_Function/Medication-Techniques-and-More Time: 5:15 Source: www.msktc.org

The Brain Injury Family Intervention Feelings Checklist 4 minutes TBI: Antidepressant Medications: http://www.msktc.org/tbi/Hot-Topics/depression/antidepressant_Medications Time: 2:44 Ambiguous Loss: http://www.msktc.org/tbi/Hot-Topics/Relationships/Ambiguous-Loss Time: 2:08 Smartphones as Memory Supports: http://www.msktc.org/tbi/Hot-Topics/Memory/Smartphones_Memory_Support Time: 1:48 SCI Source: www.msktc.org

Managing Pain: Shoulder Exercise for People with Spinal Cord Injury 4 minute Managing Pain: Shoulder Exercise for people with spinal cord injury: http://www.msktc.org/sci/Hot-Topics/Pain/Shoulder-Exercises Source: www.msktc.org

Hot Topic Modules (Factsheets, Videos, Slideshows)

Tour of the MSTKC Website http://www.msktc.org/

How MSKTC Resources Benefit You, Your Patients, and Their Families Information for Peer Support Groups Research-based Resources to Enhance Daily Living for People with SCI & TBI

How MSKTC Resources Benefit You, Your Patients, and Their Families Go-to-Resources for Caregivers Inform Recovery and Rehabilitation

How MSKTC Resources Benefit You, Your Patients, and Their Families Research-based consumer friendly free resources for patient education programs Print and video materials to display in patient and family waiting rooms

How MSKTC Resources Benefit You, Your Patients, and Their Families Educate Decision-makers about SCI and TBI to Make Positive Change Free Content for Independent Living Resource Libraries

How MSKTC Resources Benefit You, Your Patients, and Their Families And much more! Tell us how you have used MSKTC resources with our StoryShare Initiative

How MSKTC Resources Benefit You, Your Patients, and Their Families Tell us about your and your patients’ information needs by participating in our survey Provide input on our products

We want to hear from YOU Participate in the TBI and SCI Model Systems research studies: http://www.msktc.org/sci/recruitment http://www.msktc.org/tbi/recruitment

Open Discussion Questions Comments Input

Xinsheng “Cindy” Cai, Ph.D. Contact Information Xinsheng “Cindy” Cai, Ph.D. ccai@air.org 202-403-6929

Thank you!