Nancy Mason MacLellan, Lucy Lach, and Frank Gavin Location: Rose-Fuchsia Room (map)
MEET THE INVESTIGATORS
Steven Miller, Anne Synnes, Don Mabbott, Darcy Fehlings, Adam Kirton, Patricia Birch, Astrid Guttmann, Hal Siden, Patrick McGrath, Lucy Lach, Keiko Shikako-Thomas, Jennifer Crosbie, Julia Orkin, Maureen O’Donnell, and Ariane Marelli
Location: Rose-Fuchsia Room
The research being conducted by CHILD-BRIGHT investigators has the potential to change the lives of those living with brain-based developmental disabilities and their families. At this session, an investigator from each CHILD-BRIGHT project will tell us about the story behind their research question and give us a brief update on their project.
Format: Investigators will primarily use pictures and graphics and have only 2 minutes to each tell their story. Let this session serve as an introduction between yourself and the investigators and introduce yourself to the research team at the poster session, where each team will provide an in-depth progress report on their project.
Objectives: 1. To put a face to the name of an investigator from each project. 2. To understand the motivation behind their research and get a brief update on their project. 3. To promote the poster session presentations.
CAN PATIENT-PARTNERS INFORM INVESTIGATORS ON HOW TO IMPROVE RECRUITMENT RATES?
Lucy Lach (moderator), Ali Martens, Lori Seller, Samadhi Mora Severino, and Barb Galuppi
Many study-eligible participants choose not to participate in research, and they might decline because of issues with the protocol, participating would be inconvenient, or other reasons. Researchers aim to recruit participants as efficiently and sensitively as possible, but could an open discussion about recruitment practices lead to higher recruitment rates and more satisfied participants?
Format: In this panel discussion, 2 parents of patients representing different pediatric age groups will join 2 researchers (coordinator, ethicist) to provide their perspectives on recruitment.
Objectives: 1. Learn strategies from the parents themselves about what to do to improve recruitment. 2. Learn how researchers and administrators approach recruitment. 3. Assess whether there is a gap that can be closed between the needs of the parents and the strategies of the researchers.
STAKEHOLDER ENGAGEMENT: WHERE ARE WE IN OUR QUEST FOR SOCIAL CHANGE?
Jonathan Weiss, Connie Putterman, and Keiko Shikako-Thomas
Location: Rose-Fuchsia Room (map) In this session, we will present the current state of stakeholder engagement at CHILD-BRIGHT and how it is currently being measured. We will work together to revisit our engagement strategies and find common solutions to improve the way we engage with stakeholders and measure its outcomes.
Format: Presentation, group discussion, and interactive activity
Objectives: 1. To present different perspectives on stakeholder engagement from an invited guest. 2. To describe our findings and current status of stakeholder engagement in the CHILD-BRIGHT Network. 3. To establish the role of the Knowledge Translation Program in developing the measurement tool and analyzing stakeholder engagement in the network. 4. To identify our strengths, gaps, and discuss solutions to improve stakeholder engagement. 5. To have CHILD-BRIGHT members share what they have done with regards to stakeholder engagement, and discuss what can be done differently.
TRAINING FOR SUSTAINABILITY IN PATIENT-ORIENTED RESEARCH
Kent Cadogan-Loftsgard, Amy Outschoorn, Leah Getchell, Caroline Wong, Tracy Jirikowic, and Katherine Bevans
Location: Rose-Fuchsia Room (map) Through a co-building approach, patient engagement is proving to be critical to the research process. Patient-partners’ strong initial enthusiasm for involvement in research can wane due to extended timelines or lack of effective communication by team leaders. How does the research project team meaningfully and practically sustain patient engagement once participants are recruited or involved? What critical role can the Training Program play to facilitate this process?
Format: This interactive panel discussion will involve the audience and incorporate the diverse perspectives of patients, parents, and researchers who all have experiential knowledge of meaningful patient engagement.
Objectives: 1. To explore recurring issues that commonly impede or promote sustainable patient engagement. 2. To share practical lessons learned relative to patient engagement strategies. 3. To appreciate the structures or mechanisms needed to support successful patient engagement. 4. To delineate specific training resources that can inform effective and meaningful patient engagement, or identify unmet needs.
All meeting attendees including patients, families, trainees, staff, and faculty, are invited to attend our Poster Session (3:15-5:00 p.m.) and our Poster cinq à sept (5:00-7:00 p.m.).
This session is an ideal opportunity for multidisciplinary health professionals, researchers, and patients/families to illustrate the extensive ongoing and innovative activities within their projects and initiatives that are focused on childhood brain-based developmental disabilities. We are excited to invite CHILD-BRIGHT members and all other meeting attendees to showcase their ongoing research work. The aim of this poster session is to share progress updates of their work over the previous year and to further strengthen connections between all members.
In Quebec, a cinq à sept brings together friends and colleagues around a specific event, in a setting where wine, beer, and cocktails are served alongside finger foods and hors d’oeuvres. It’s akin to a wine and cheese, or a slightly more formal happy hour. It’s an ideal venue for multidisciplinary health professionals, researchers, and patients/families to gather and converse about the extensive and innovative activities going on within their projects.