This session will focus on “how” rather than “why” we should be engaging populations who have often not been included adequately or at all as subjects or as partners in research related to children with disabilities. Among the populations we will be considering are parents and children with intellectual disabilities, Indigenous people, younger parents (under 25), people who live with financial hardship, and immigrant and refugee families. Each facilitated round-table group will focus on one population for 30 minutes. Participants can then choose to stay with the same population for another 30 minutes or move to a different table to discuss engagement with a different population. Together, we will identify barriers and ways to overcome them.
Format: Round-table discussions. 11 tables, 1 topic and 8-10 spaces per table, including the table lead. Over the course of the hour, participants will join 2 tables (for 30 minutes each). Topics are as follows;
1. Indigenous People (Brenda Elias) 2. Indigenous People (Pam Naponse-Corbiere and Brenda Johnson) 3. Children and youth with intellectual disabilities (David Nicholas) 4. LGBTQ2S (Nancy Poole) 4. Fathers (Aline Bogossian) 6. Children and youth with rare disorders and their families (Maryam Oskoui) 7. Parents of severely disabled children (Brenda Agnew) 8. Parents living with income insecurity (Kate Robson) 9. Newcomers whose first language is not English (Jill Hanley) 10. Parents with intellectual disabilities (Laura Pacheco) 11. Youth who use communication devices and/or live with multiple diagnoses (Dolly Meena-Dack)
Objectives: 1. To reinvigorate commitment to expanding the patient-partner demographic. 2. To generate a set of actions for engagement based on dialogue at each table.
Note: "Recruiting" refers to engagement to participate in the study as well as engagement to contribute as a research partner.
LEARNING TOGETHER: SHARED STRATEGIES AND RESOURCES ACROSS THE NETWORK
Nora Fayed, Wendy Ungar, Jennifer Zwicker, Jan Willem Gorter, Rick Watts, Maryna Yaskina, Tanya Voth, Lawrence Richer, Andrea Cross, Pierre Zwiegers, Josee Della Rocca, Valerie Frost, Donna Thomson, Patrick Berrigan
CHILD-BRIGHT members are developing expertise and resources for their project that could be useful for your project. One of the main benefits of working in a network is the opportunity to share this expertise and these resources across the network, so that the network becomes greater than the sum of its parts.
This is a one hour session at which members can learn about a resource or a strategy developed by a peer that could be integrated in a future research project.
Format: Round-table discussions. 12 tables, 1 topic and 8-10 spaces per table, including the subject matter expert. Over the course of the hour, participants will join 2 tables (for 30 minutes each). Topics include;
1. Measuring health and non-health resource use and costs for economic evaluation (Wendy Ungar, Jennifer Zwicker, and Patrick Berrigan) 2. Optimizing patient-reported outcome measures for clinicians and patient stakeholders (Nora Fayed) 3. How the Data Coordinating Centre can help you (Rick Watts and Maryna Laskina) 4. Secondary Data Use (Tanya Voth and Lawrence Richer) 5. Engaging the Public in Research on Social Media (Jan Willem Gorter) 6. Family engagement in research in the digital age: Exploring how family-researcher partnerships are fostered through online Facebook groups (Andrea Cross and Donna Thomson) 7. Patient Advisory Groups: How to make them work (Julia Orkin) 8. Using CHILD-BRIGHT’s iKT Tracking Tool to document and improve engagement strategies (TBD) 9. Using whiteboard video technology to communicate your research: What you need to know 10. Resources available through CHILD-BRIGHT’s Training Program (Pierre Zwiegers) 11. How to keep donors and foundations engaged in research: Perspectives from foundation representatives (Josée Della Rocca and Valerie Frost) 12. Fundraising for your research: How to develop and strengthen relationships with foundations (Michael Shevell)
Objective: The objective of this session is for network members to learn about 2 resources or strategies developed by a CHILD-BRIGHT peer that could be integrated in a future research project.
This session will provide a capsule summary of the key accomplishments thus far by CHILD-BRIGHT across the various programs and services. As a collective community, we will consider the ways that being part of this network provides added value to our individual members, to the research projects, and ultimately to children with brain-based developmental disabilities and their families. Together we will explore ways to maximize the benefit of CHILD-BRIGHT membership for all stakeholders, and we will co-build a sustainability plan so as to ensure that the network continues to support our collective vision beyond 2021. Our network is now well established, and as we look forward, we will need to prioritize particular areas to ensure that we achieve brighter futures for children with developmental disabilities and their families.
Objectives: 1. To summarize the key successes of CHILD-BRIGHT over the first two years as a SPOR network. 2. To determine what the value added is for members to be part of this network, and discuss how best to maximize this benefit. 3. To co-build a sustainability plan. 4. To collectively prioritize the areas to improve upon in our network’s programs and processes, including enhancing the level of citizen engagement.