Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.

Background: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.

Objective: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.

Background: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course.

Main Text: From its inception, the FER Course has been delivered in partnership with family leaders and researchers.

Realist process evaluation of the knowledge translation programme of a patient-oriented research network.

Rationale: The Knowledge Translation (KT) Programme of a pan-Canadian strategic patient-oriented research network focused on brain-based developmental disabilities aimed to mobilize knowledge relevant to the network members. The programme also promotes and studies integrated Knowledge Translation (iKT) approaches involving different interested parties, such as researchers, patient-partners and decision-makers, in all parts of the knowledge creation process.

Aims And Objectives: The objective of this study is to advance research programme evaluation methods through a realist evaluation of the process of implementing iKT activities.

Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities.

Background: Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work.

Knowledge Mobilization Events: After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles.

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

Background: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project.

A holistic approach to integrating patient, family, and lived experience voices in the development of the BrainHealth Databank: a digital learning health system to enable artificial intelligence in the clinic.

Artificial intelligence, machine learning, and digital health innovations have tremendous potential to advance patient-centred, data-driven mental healthcare. To enable the clinical application of such innovations, the Krembil Centre for Neuroinformatics at the Centre for Addiction and Mental Health, Canada's largest mental health hospital, embarked on a journey to co-create a digital learning health system called the BrainHealth Databank (BHDB). Working with clinicians, scientists, and administrators alongside patients, families, and persons with lived experience (PFLE), this hospital-wide team has adopted a systems approach that integrates clinical and research data and practices to improve care and accelerate research.

Building a culture of engagement at a research centre for childhood disability.

Background: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada.

The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review.

Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands.

Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review.

Purpose: We completed a scoping review to: (1) identify strategies that have been used to engage hard-to-reach populations in childhood disability research, and (2) synthesize information as to whether and how these strategies were evaluated.

Methods: Systematic search of six electronic databases and grey literature to identify articles published in the last 10 years. Studies published in English, French, and Spanish reporting on strategies used to engage hard-to-reach populations in childhood disability research were eligible for inclusion.