For far too long, families from historically marginalized communities have struggled to find culturally relevant, trusted, accessible and evidence-based health information. This lack of available information, coupled with the infodemic we are currently facing, is leading to alarmingly high rates of misinformation, feelings of isolation and distress and overall distrust in the healthcare system.

Recognizing this gap in information in the disability community, Holland Bloorview partnered with Our Kids' Health (OKH), a wide-reaching community dedicated to creating and delivering trusted, culturally relevant health information through social media and digital platforms.

This partnership, aligned with our commitment to care that’s socially accountable, brought together Holland Bloorview's expertise in childhood disability and OKH’s experience creating credible, evidence-based health information for culturally diverse families, to deliver a series of tailored health resources on childhood disability.

“Holland Bloorview’s partnership with Our Kids’ Health is a great example of a whole that is greater than the sum of its parts. The evidence-based, multi-lingual resources in the Disability Hub have the potential to reduce health inequities related to health literacy, giving families increased confidence in navigating their child’s health-care journey. Essential information like how to advocate for your child’s needs at school and how to manage your well-being as a caregiver of a child with a disability, will empower families with the knowledge and skills they need.” - Joanne Maxwell, vice president, experience, transformation & social accountability at Holland Bloorview. 

“The Our Kids’ Health team is incredibly excited to launch this partnership with Holland Bloorview and Bloorview Research Institute to bring reliable, relevant information about childhood disability and participation in research to families across 10 cultural-linguistic communities. This partnership will support the creation of community-led multilingual digital resources that directly address health informational priorities across communities who have experienced intersectional marginalization.” - Dr. Ripudaman Singh Minhas, OKH project lead.

The partnership includes two key projects, both of which will be launching this month:

• The OKH Disability Hub: a dedicated platform offering culturally adapted parenting resources for families of children with disabilities.
• Representation matters campaign: a series of research-focused videos aimed at sharing the importance of participating in research and increasing representation in health research.

“As both a family leader and former client of Holland Bloorview, I understand the importance of having access to expert-reviewed, evidence-based information. This kind of information is crucial for advocacy and helps us, as clients, navigate our way forward. The hub is significant as it provides families with critical, relevant and expert-reviewed information that empowers them to make informed decisions about their child's care.” – Vance Tang, family leader, Holland Bloorview.

Designed to bring reliable, accessible and inclusive health information and educational resources to all children, youth in families, in ways that meet their unique needs, fourteen health related videos and infographics were created. The resources feature families and health-care providers representing 10 cultural and linguistic communities, including Hispanic, Arabic, Cantonese, Mandarin, Tamil, Punjabi, Filipino/Tagalog, Black-Afro-Caribbean and Ukrainian. Topics include:

• How to foster autonomy
• How to navigate transitions
• How to support siblings if children with disabilities
• Getting assessed for a developmental disability

A new resource will be launched every week for the next 3 months. We invite you to follow along through social media, the Disability Hub or Holland Bloorview’s YouTube channel.

Representation in research

Representation in research is essential to ensuring that health and developmental outcomes reflect the diverse needs of all children. The BRI is dedicated to advancing research practices through inclusion, diversity, equity, accessibility and anti-racism (IDEAA).

As part of this commitment, the BRI is working to break down barriers to research participation and increase access for children, youth and families from historically under-represented communities.

These barriers include misinformation and mistrust around research participation. Therefore, BRI partnered with OKH, with support from the Province of Ontario Neurodevelopmental Disorders Network (POND), to launch a video campaign highlighting the importance of representation in research.

The three-part, culturally adapted video series will explore key themes:

• Why participate in research
• Why participation matters
• Why representation matters

Designed to foster inclusivity, the campaign features families and health-care providers representing 10 cultural and linguistic communities, and will be available on Holland Bloorview’s YouTube channel and the Our Kids' Health Research Hub.

“Through our partnership with Our Kids' Health, we are expanding outreach to historically underrepresented communities, ensuring their voices and experiences shape the future of research. By increasing their representation in the data that informs decision-making, we can build a more inclusive and equitable healthcare system.” - Dr. Evdokia Anagnostou, vice president of research and director of the Bloorview Research Institute.

“Diverse perspectives in research are crucial for practical, innovative, and equitable healthcare. By ensuring that all voices are heard, the full spectrum of humanity is reflected, and all people are assured of appropriate treatment options and outcomes.” - Stella Ugbesia, POND family member.

With gratitude

This important work will undoubtedly have a lasting impact of the lives of children, youth and families, and the healthcare system more broadly. Holland Bloorview extends its gratitude to the staff, family leaders, Family Advisory Committee, Youth Advisory Council, and Research Family Engagement Committee for their contributions in shaping this work. The BRI also thanks POND’s Patient Advisory Committee for their insights and input. POND is a partner research program of the Ontario Brain Institute.