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, 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. 9 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 (Pam Naponse-Corbiere) 2. Children and youth with intellectual disabilities (David Nicholas) 3. LGBTQ2S (Nancy Poole) 4. Fathers (Aline Bogossian) 5. Children and youth with rare disorders and their families (Maryam Oskoui) 6. Parents living with income insecurity (Kate Robson) 7. Newcomers whose first language is not English (Jill Hanley) 8. Parents with intellectual disabilities (Laura Pacheco) 9. Youth who use communication devices and/or live with multiple diagnoses (Dolly Menna-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
Eyal Cohen (moderator), Adam Kirton (moderator),Patrick Berrigan, Wendy Ungar, Jennifer Zwicker, Nora Fayed, Rick Watts, Maryna Yaskina, Tanya Voth, Lawrence Richer, Jan Willem Gorter, Andrea Cross, Donna Thomson, Julia Orkin, Aryeh Gitterman, Connie Putterman, Pierre Zwiegers, Josée Della Rocca, Valerie Frost, and Michael Shevell
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. 11 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).
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.
Table 1: Measuring health and non-health resource use and costs for economic evaluation (Patrick Berrigan, Wendy Ungar, and Jennifer Zwicker).
Table objectives: - Understand the importance of collecting data on resource use and costs - Share and exchange practical information on resource use and cost data collection.
Table 2: Optimizing patient-reported outcome and experience measures for clinicians and patient stakeholders (Nora Fayed).
Table objectives: - Develop an understanding of a patient-reported outcome measure (PROM) and a patient-reported experience measure (PREM) - Discuss how to choose an appropriate PROM or PREM - Discuss the consequences of choosing an inappropriate PROM/PREM and feasible alternatives.
Table 3: How the Data Coordinating Centre can help you (Rick Watts and Maryna Yaskina).
Table objectives: - Learn tips on becoming savvy with REDCap - Learn about data management and quality - Ask questions about statistical methods.
Table 4: Secondary Data Use (Tanya Voth and Lawrence Richer).
Table objectives: - Learn what funders (CIHR) and publishers are expecting - Learn about the challenges and opportunities associated with secondary data use - Learn how the DCC will support CHILD-BRIGHT with secondary data use - Learn about the benefits of thinking about how secondary data use can benefit the network moving forward.
Table 5: Engaging the public in research on Twitter: practical pointers (Jan Willem Gorter, a.k.a the Transition Doctor @Dr_Gorter).
Table objectives: - Explore the benefits and risks of using Twitter - Learn how to engage the public on Twitter (Twitter 101) - Practice using the conference hashtag and twitter chat (bring your device!)
Table 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).
Table objectives: - Introduce and share lessons learned from the Parents Partnering in Research (PPR) and Strongest Families Facebook Groups - Describe the Codes of Conduct and its role in supporting a safe community for knowledge sharing and exchange - Provide examples of how these Facebook groups have been used to facilitate introductions between parents and researchers and foster meaningful engagement throughout the research process.
Table 7: Collaboration and Co-design: Family Advisory Groups for Research and Clinical Care (Julia Orkin).
Table objectives: - Learn how to establish a parent advisory group for research and clinical purposes - To understand the principles of co-design methodology through case discussion - To explore examples of outputs from a family advisory and how the co-design model can improve productivity.
Table 8: Using CHILD-BRIGHT’s iKT Tracking Tool to document and improve engagement strategies (Aryeh Gitterman and Connie Putterman).
Table objectives: - Learn about the objectives of integrated knowledge translation (iKT) as it applies to CHILD-BRIGHT - Learn how to use the iKT tool to monitor and improve your KT activities.
Table 9: Resources available through CHILD-BRIGHT’s Training Program (Pierre Zwiegers).
Table objectives: - Learn about the Training Program’s ongoing outputs - Learn about the Training Program’s new initiatives that are in development - Provide your input to the Training Program about gaps in POR training.
Table 10: How to keep donors and foundations engaged in research: Perspectives from foundation representatives (Josée Della Rocca and Valerie Frost).
Table objectives: - Learn how to determine what your donors are looking for - Review sample content from effective impact reports.
Table 11: Fundraising for your research: How to develop and strengthen relationships with foundations (Michael Shevell).
Table objectives: - Learn how to initiate, maintain, and strengthen relationships with foundations - Learn how to align your priorities of donors and researchers.
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.