Events — CHILD-BRIGHT Network

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2020 SLS

Filtering by: 2020 SLS

2021 LEARNING SERIES: Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth
Aug
3
1:00 PM13:00

2021 LEARNING SERIES: Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth

This event is now over but if you missed it, please feel free to watch the recording below


Join us again this year as we host free webinars as part of our annual Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR).

Join us for the first of our 2021 sessions:

2021SLS_Session1.png

When: Tuesday, August 3, 2021
Time: 1:00 p.m-2:00 p.m. EDT / 10:00-11:00 a.m. PDT

The session will focus on diversity, accessibility, and accommodation considerations when engaging youth in patient-oriented research. The major session objectives are:

  • Defining inclusion, diversity, equity, and accessibility, and how these differ from accommodations

  • Detailing the importance of providing accommodations when engaging youth-partners with lived experience

  • Providing some advice to both researchers and youth-partners on best practices to encourage self-identification and disclosure

  • Offering examples of where/how previous efforts in inclusion, diversity, equity, accessibility, and accommodations were successful or challenging based on the facilitators’ personal experiences

  • Providing the audience an opportunity to ask questions related to inclusion, diversity, equity, accessibility, and accommodations in patient-oriented research that engages with youth-partners.

PRESENTERS:

  • Logan Wong, National Youth Advisory Panel (NYAP) Chairperson, CHILD-BRIGHT Network

  • Shafniya Kanagaratnam, NYAP Member, CHILD-BRIGHT Network

  • Gillian Backlin, NYAP Member, CHILD-BRIGHT Network

  • Julia Tesolin, Administrative Assistant, CHILD-BRIGHT Network

  • Corinne Lalonde, Citizen Engagement Program Coordinator/Project Manager, CHILD-BRIGHT Network

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Learning together: The use of simulation to enhance and enable authentic and meaningful research partnerships
Jul
21
11:30 AM11:30

Learning together: The use of simulation to enhance and enable authentic and meaningful research partnerships

This webinar is now over but if you missed it, please feel free to watch the recordings below


Join us again this year as we host free webinars as part of our annual Summer Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR)

Join us for the second of these sessions:

2020SLS_Part2.jpg

When: Tuesday, July 21, 2020
Time: 11:30 a.m-1:00 p.m. EDT / 8:30-10:00 a.m. PDT

There is a growing body of evidence that shows that involving patients and their families in applied clinical research as patient research partners can enhance the relevance, quality, impact and utility of research findings. However, the literature describes a number of multifaceted and complex challenges that researchers and patient-partners face when partnering in the research process.  Some of the core challenges described in the literature include:

  • Setting clear and realistic expectations for all parties

  • Patient research partners feeling empowered to provide meaningful input

  • Eliciting meaningful input

  • Addressing opposing views or opinions.

The underlying themes permeating these challenges are trust, reciprocity and communication. Existing online modules are helpful resources to teach the basic principles of research and the concept of patient-oriented research; however, given the complexity of these relational challenges, didactic and/or independent courses are not sufficient to ensure meaningful patient research partner engagement. 

Research suggests that simulation is a powerful tool that allows learners the opportunity to recreate challenging situations within the healthcare environment and to learn from these experiences in a safe and controlled setting.  Simulations use ‘devices, trained persons, lifelike virtual environments, and contrived social situations to mimic problems, events or conditions that arise in professional encounters’. During and directly after a simulation, learners are guided through rich discussions and have the opportunity to react to, rethink and reshape their learning.  

Given the above, our team has leveraged a simulation-based, co-designed approach to develop a suite of four simulations for research teams and patients and caregivers to learn how to support each other through some of the most complex and challenging situations associated with patient engagement in research. These simulations were co-developed with youth with disabilities, parents of children with disabilities, trainees, research staff, and scientists. 

During this webinar we will endeavour to:

  1. Introduce the audience to the use of simulation as a powerful tool that allows learners the opportunity to recreate challenging situations and learn from these experiences in a safe and controlled environment.

  2. Share our approach to evaluating how youth, parent/primary caregivers, trainees, clinicians, and researchers construct their experience of co-building collaborative research simulations.

  3. Demonstrate and debrief two research engagement simulations:  one through prerecorded video; and one live with standardize patients (actors) engaged in real time.

  4. Share our approach to evaluating how youth, parent/primary caregivers, trainees, clinicians, and researchers construct their experience of co-building collaborative research simulations.

Learning Objectives:

  1. Understand the value of simulation as a learning tool in general and how it can be leveraged to support the learning of researchers, research staff, trainees and patients partnering in research.

  2. Experience two simulations focused on the challenging and complex aspects of research partnership including but not limited to: identifying a research partner, setting expectations; negotiating and including different perspectives and priorities; constructing appropriate knowledge translation activities; demonstrating the value of lived experience; and managing scope creep.

  3. Prepare to apply the basic principles of simulation to facilitate two of the research simulations created to support research engagement at your own organization.

This will be an interactive session and participants will be asked to engage in dialogue and step into a simulation virtually. Active participation is voluntary but encouraged.


Facilitators:

  • Kathryn Parker, Senior Director, Academic Affairs and Simulation Lead, Teaching and Learning, Holland Bloorview Kids Rehabilitation Hospital

  • Michelle Phoenix,  Assistant Professor, CanChild and School of Rehabilitation Science McMaster University. Adjunct scientist Bloorview Research Institute

  • Nadia Tanel, Director, Research Growth and Expansion, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital

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Developing Ethical 'Terms of Engagement' for Partnering with Young People in Healthcare Research and Governance
Jul
9
3:00 PM15:00

Developing Ethical 'Terms of Engagement' for Partnering with Young People in Healthcare Research and Governance

This webinar is now over but if you missed it, please feel free to watch the recordings below

 

Join us again this year as we host free webinars as part of our annual Summer Learning Series. Our webinars are open to all interested in delving deeper into topics related to Patient-Oriented Research (POR)

Join us for the first of these sessions:

2020SLS_Part1.jpg

When: Thursday, July 9, 2020
Time: 3:00-4:00 p.m. EDT / Noon-1:00 p.m. PDT

Research investigating young people’s views on the meaning and perceived benefits (or potential harms) of patient engagement in research studies or other healthcare advisory roles is lacking. This session will showcase research in progress that is funded, in part, by a CHILD-BRIGHT Training Innovation grant. The study involves partnering with youth with disabilities to learn about ethical challenges that arise in relation to fostering meaningful and consequential patient engagement roles and partnerships with disabled youth. Following an overview of literature and debates concerning the benefits and potential unintended harms associated with patient engagement, the presentation will shift to describing the design and methods being used to elicit young people’s own views and experiences in the context of taking up patient engagement roles in children’s rehabilitation.

The aim is to partner with young people to develop guiding principles or ‘terms of engagement’ for advisory roles that optimize potential benefits and are equitable, just, and responsive.

Facilitator: Dr. Gail Teachman, Assistant Professor (Western University, School of Occupational Therapy)

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