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To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our second topic.

When: Thursday, November 25, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

In this session we will provide an overview of a select number of resources aimed at developing capacity in patient-oriented research (POR) and outline the benefits & drawbacks of each. Selected resources include:

POR Training Programs:

• Patient-Oriented Research Curriculum in Child Health (PORCCH)

• Family Engagement in Research Course (FER)

• Patient-Oriented Research Training and Learning – Primary Health Care Online Modules (PORTL-PHC)

• FYREworks (Family/Youth/Researcher Education)

• Partners in research Course(PiR)

POR Toolkits & Resources:

• Learning Together Simulations

• The Involvement Matrix

• Workbook to guide the development of a Patient Engagement In Research
  (PEIR) Plan

• SCPOR Patient-Oriented Research Level of Engagement Tool

• Methods of Patient & Public Engagement - A Guide

• Recommendations on Patient Engagement Compensation

• CHILD-BRIGHT: Guidelines for Patient-Partner Compensation

• CIHR Jargon Buster

The goal of the session is to highlight select resources that can be used to familiarize researchers and patient-partners to the basic elements of POR and promote authentic engagement within the research team. During the session, audience members will also be encouraged to share any specific POR capacity-development assets that they have found particularly useful in the context of their own work.

In addition to the resources featured above, the PODs team wanted to share a more extensive compilation of available resources with the broader community. Please find the linked spreadsheet here.  It is meant to be an editable resource with the intention to crowdsource additional tools, resources, and training programs that would be beneficial to POR teams.

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Children with severe neurological impairment frequently experience pain, often cannot tell us where it hurts, and standard approaches offer little relief. In this webinar, we will review pain in this context. We will provide new ways to think about pain and approaches to assessment and management in this highly vulnerable population when good therapy doesn’t seem to be working. 

Tim Oberlander and Hal Siden have been working in this field for a long time and often find themselves stuck in therapeutic ‘rabbit holes’. They look forward to having a thoughtful conversation on this topic that is so important to many families and clinicians alike. 

When: Wednesday, November 10, 2021
Time: 11 a.m. - 12 p.m. EST

Learning Objectives:  

1. Describe the subtleties of pain and irritability behaviours in children with neurological impairment. 

2. Describe how the pathway, which is core to the study, grew out of our clinical and research experience.   

3. Show how research and clinical work synergize in improving our understanding and care of children (and others) with complex conditions.

Speakers

Harold Siden 

Hal Siden is a Clinical Professor in the Department of Pediatrics at the University of British Columbia. He is also the Medical Director for Canuck Place Children's Hospice, and Division Head, Palliative Medicine at BC Children's Hospital, both located in Vancouver, British Columbia. Hal has expertise in pediatric palliative care and pain management. He has worked for 20 years with children living with complex conditions and life-threatening diseases. He has a particular interest in pain assessment and pain management. Pain is not well understood in children who are cognitively normal, and is very poorly understood in children with neurological conditions; finding new treatments and tools for assessing pain is therefore important and much of his research is focused in this area. 

Tim Oberlander

Tim Oberlander is a physician-scientist whose work bridges developmental neurosciences and community child health. As a clinician he manages complex pain in children and has a particular interest in managing pain in children/youth with developmental disabilities. As a researcher, his primary interest has been in studying how early life experiences shape stress/pain and related neurobehavioral outcomes during childhood. His work extends from molecular/genetic studies to population epidemiological studies that characterize neurodevelopmental pathways that reflect risk, resiliency and developmental plasticity. Outcome measures include studies of pain reactivity, attention, mood and executive functions across early childhood. The goal of Tim’s work is to understand how and why this happens.  

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Babies with congenital heart disease are at greater risk of suffering brain injury and impaired brain growth. There is a significant gap in understanding the physiologic changes in cardiovascular and cerebral hemodynamics. The combination of serial cardiovascular and brain MRI has provided an opportunity to study the relationship between prenatal and postnatal physiology and brain development. It is likely that an improved understanding of the physiology that results in abnormal cerebral metabolism will lead to identifying the risk factors for abnormal brain development in congenital heart disease.

When: Wednesday, October 6, 2021
Time: 11:00 a.m. - noon p.m. EST

Learning objectives:

1. Review the epidemiology and phenotype of neurodevelopmental outcomes in congenital heart disease

2. Discuss the putative aetiologies of abnormal brain development in CHD

3. Consider the role of abnormal cardiovascular physiology in this pathogenesis and review how this might be mitigated

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

To enhance the exchange of ideas between all our stakeholders, the CHILD-BRIGHT Network is happy to launch its Patient-Oriented research Discussions (PODs). In each of our four (free!) sessions, we will explore content related to patient engagement in research including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials related to patient-oriented research. Each session will consist of a 60-minute exploration of the resources and topic identified by the host presenter, followed by an optional 30-minute networking opportunity. 

Join us to discuss our first topic.

When: Thursday, September 23, 2021
Time: 8:00 - 9:30 a.m. PT / 11:00 a.m. - 12:30 p.m. ET

Patient engagement throughout the research process takes effort and time. Incorporating a POR perspective in a graduate-student led project presents unique challenges that can be addressed by employing high-level strategies that promote stakeholder buy-in. During this session we will outline various approaches that can set the stage for productive and authentic engagement.

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:

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

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

We are inviting all patients, families, trainees, staff, and faculty to attend our 2021 CHILD-BRIGHT Virtual Symposium: Let’s Dream Together as we Look Forward with Project Updates, Posters, and Questions. With this year's theme, we aim to feature updates from CHILD-BRIGHT research projects, exhibit posters from patient-oriented research projects investigating childhood brain-based neurodisability, and brainstorm solutions to patient engagement issues raised.

The Symposium will take place on May 26, 2021 and is scheduled for 11:00 a.m. - 2:30 p.m. EDT.

This is an ideal venue for all health professionals, researchers, and patients/families to share project updates in an interdisciplinary setting to highlight the extensive, ongoing, and innovative activities in patient-oriented research. Further, it is a great space in which to share patient-oriented research questions within the community and receive input.

Tune in to the Virtual Symposium

On May 26 as of 11 a.m. EDT, click on the link below to access the Virtual Symposium platform. Unsure how to navigate the platform? Consult the Navigation Guide here to help orient you to the platform.