As a patient-oriented research network that aims to engage all people touched by brain-based developmental disabilities as meaningfully as possible in all aspects of our work, citizen engagement is a core component of what CHILD-BRIGHT does. It’s only by creating and maintaining ever stronger connections with patient-partners, families, caregivers, and the wider community that we can fully accomplish our network’s mandate: to improve life outcomes for children with brain-based developmental disabilities and their families.
In our network, it falls to the Director of Citizen Engagement (CE) to solidify such engagement across the entire portfolio of network activities. Since 2017, Frank Gavin has, as inaugural Director of Citizen Engagement, expertly helmed both the Citizen Engagement program and Citizen Engagement Council. As Frank’s term as Director comes to a close, we are thrilled to announce that community autism administrator and advocate and CHILD-BRIGHT parent-partner Sharon McCarry will be taking up the mantle as Director of Citizen Engagement and Chair of the Citizen Engagement Council.
Sharon is no stranger to CHILD-BRIGHT or the Canadian brain-based developmental disability community. In addition to her role as parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program, Sharon is a passionate community advocate for families living with autism spectrum disorder (ASD) and other neurodevelopmental disabilities. She is committed to making meaningful and significant changes in disability-related policies and services that benefit families.
In 2008, she founded La Fondation Place Coco, a Canadian charity that manages and operates the Little Red Playhouse (LRP). LRP is an integrated preschool, where young children, both neurodiverse and neurotypical, learn side-by-side in a supportive educational setting.
Sharon is also an active volunteer. She is a member of the Canada Revenue Agency’s Advisory Committee on the Disability Tax Credit, which advises the Minister of National Revenue and the CRA on how the Agency can improve the way it administers and interprets tax measures for Canadians with disabilities. An accomplished business professional, Sharon has also worked with numerous Fortune 500 companies in marketing strategy and brand management. She holds a BA from McGill University and lives in Montreal, Quebec, where she is a mother to two sons, one with autism.
Sharon will now bring these experiences in the professional, research, and advocacy realms to bear on her new role as Director, as she trains her sights on diversifying our patient-partner group and improving representation of inadequately represented populations in our network.
“After many years as a parent-partner, I am delighted to take on a more active role at the heart of CHILD-BRIGHT,” Sharon shared.
“In the past five years, CHILD-BRIGHT has nurtured an active and thriving patient and research community. I’m excited to come in and continue to shape the Citizen Engagement program at such a pivotal time for the network, as focus turns to ensuring the sustainability of its innovative patient-oriented research work in the years to come. It’s by continuing to engage all members of this community that we will create brighter futures for children with brain-based developmental disabilities and their families.”
“Of course,” Sharon added, “It is in no small part thanks to Frank’s efforts that CHILD-BRIGHT has been able to foster such a vibrant pan-Canadian community! I have large shoes to fill but am committed to building upon this work in the years ahead.”
Frank’s involvement with the network stretches back to its very inception. He played an integral role in the application to the SPOR Chronic Disease Network competition in 2015 that would lead to CHILD-BRIGHT’s creation. He then took a lead role in recruiting members of the Citizen Engagement Council and began chairing the council in the fall of 2016.
Between 2017 and 2021, he led the citizen engagement efforts of the network as Director of Citizen Engagement and member of the network’s Executive and Network Steering Committees. In that time, he led a number of initiatives to fruition, always guided by patient-partner input.
Along with the other members of the Citizen Engagement Council, he developed the network’s patient compensation guidelines, which have continued to evolve over the years to respond to patient-partner needs. He also created the Parent Peer Mentor role (currently occupied by Carrie Costello) to better support our parent-partners.
Frank also oversaw several initiatives that increased the responsiveness of the network to patient-partner feedback, such as the development of a protocol for collecting qualitative data through interviews with patient-partners and the researchers they work with, as well as a protocol for conducting exit interviews with patient-partners who left the network.
On a number of occasions, Frank represented the Citizen Engagement program at events external to our network, including as part of an ongoing CIHR-funded project to create a national SPOR Patient and Public Engagement Evaluation Framework. (The protocol for this project was published in February of this year.)
In 2018, he coordinated and organized a panel presentation by patient-partners from all SPOR networks at the CIHR's Strategy for Patient-Oriented Research (SPOR) Summit in Ottawa, an event that brought together 300 SPOR stakeholders, including patients, federal/provincial/territorial ministries, partners, researchers and clinicians.
He represented CHILD-BRIGHT when presenting at a 2019 Hacking Health webinar and at the IMAGINE Network's Annual Meeting where he identified possible areas of collaboration between our two SPOR Networks. He also represented CHILD-BRIGHT at the Conquering the Hurt Conference, hosted by the SickKids Pain Centre in 2020, and to a University of Toronto graduate class in 2021 about ethical issues specific to patient-oriented research.
“Frank has brought so much to the network,” expressed CHILD-BRIGHT Nominated Principal Investigator and Scientific Director Annette Majnemer. “His thoughtful reflections on all things patient engagement, his wisdom in navigating the challenges that arise in a network such as ours, and, most importantly, his devotion to brighter futures for children with brain-based developmental disabilities and their families will be sorely missed.”
To honour Frank for his important and vital contributions to our network’s growth and development, the CHILD-BRIGHT Network is establishing the Frank Gavin Patient Engagement Leadership Award. This award will recognize leaders in patient engagement in research related to children with brain-based developmental disabilities and their families. Stay tuned for details on this award and how to apply in the coming weeks.
In the meantime, please join us to thank Frank for his invaluable work in helping CHILD-BRIGHT strengthen its citizen engagement over the years, and welcome Sharon to her new role!
Connect with Sharon by email at sharon.mccarry@child-bright.ca or on Twitter @sharon_coco.