COVID-19 Public Health Emergency (PHE) Unwinding Resources
Event Systems and Standards

Knowledge Gaps in the Care of Children with Medical Complexity and Neurodisability

  • Date: Thursday, September 9, 2021
  • Time: 10:00 am to 11:00 am PT

This inaugural session of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series will provide an overview of the topics that will be delivered throughout the series. Co-leads Dr. Eyal Cohen and Dr. Catherine Diskin will be joined by a family representative to speak on a 2020 international study that prioritized key clinical research questions that will be the topic for each session.

Each one-hour seminar will be hosted on Zoom and will include a panel of national experts, both clinical and caregiver. Seminars will begin with an overview of the topic and a conversation on shared decision making in pediatric complex care. The goal is to build a community of practice. Attendees are encouraged to ask questions, share insights, and engage with the panel.

The C6 seminar series is funded through a grant from the Lucile Packard Foundation for Children’s Health.


Eyal Cohen

Eyal Cohen, MD, M.Sc., FRCPC

Program Head of Child Health Evaluative Sciences at SickKids Research Institute and Co-Executive Director of the S.H. Leong Centre for Healthy Children

Dr. Cohen co-founded the Complex Care Program with his colleagues in the Division of Paediatric Medicine at the Hospital for Sick Children (SickKids) in Toronto, Canada. He is an applied child health services and policy researcher. His program of research focuses on improving outcomes for children with medical complexity (CMC) and their families. Dr. Cohen's team is developing, evaluating and disseminating a number of evidence-based interventions aimed at improving health outcomes of CMC, providing caregiving supports for families, and mitigating unnecessary health care expenditures.

Catherine Diskin

Catherine Diskin, MB, BCh, BAO, MSc, MRPCI (Paeds)

Staff physician at the Hospital for Sick Children (SickKids)

Dr. Diskin focuses on exploring the research priorities for children with medical complexity and neurologic impairment. She is developing an interest in postgraduate medical education as related to complex care. She has a subspecialty interest in neurodisability and was the first National Lead NCHD (resident) in Ireland championing doctor engagement with the health service. She earned a masters in Health Services Management from Trinity College Dublin, and her dissertation focused on the early clinical experience of pediatric trainees.

Tara and Drew

Tara Haynes, BSc

Family Voices Manager at RI Parent Information Network (RIPIN)

Tara is the mother of 3 children: Andrew, 13, who is has an undiagnosed neuromuscular condition which keeps him very limited in a physical capacity; Shamus, 9, and Grace, 6. Tara has expertise in dealing with systems of care for medically fragile children, as she has been caring for her son Andrew who is trached, on a ventilator, gtube fed, and nonambulatory. She has been working for RIPIN for over 10 years. She assists families with children with special health care needs to receive family-centered care, access services available, and help them advocate at the local, state and national level to create policies and awareness around needs and accessibility. Tara sits on many committees and workgroups providing the parent perspective and advocating for families to create better outcomes. In 2018, she was awarded RI Caregiver of the Year for her role as a mother to Andrew and her tireless advocacy for all RI families.


Debbi Harris, MS, MA

Director of the Board at The Arc of the United States

Debbi is a Director for the Board of The Arc US, a family navigation specialist for Family Voices of Minnesota, a family leader for the Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC), and a Children and Youth with Special Health Care Needs National Research Network (CYSCHNet) partner. Debbi is also a public policy advocate, working with the national Workers Advisory Group (WAG) for Paid Leave and the National Caregiver Advocacy Collaborative of the National Alliance for Caregiving. Debbi holds an M.S. in Health Science Administration, and an M.A. in English and Creative Writing, with a focus on Nonfiction, Narrative Medicine from Hamline University. She has published in Today’s Caregiver magazine, Kaleidoscope, Existere - Journal of Literature and Arts, JAMA Pediatrics as a co-author, and has co-authored a manuscript on COVID-19 and children with disabilities in the Journal of Pediatric Rehabilitation Medicine.

Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities is a 10-part seminar series that builds on an international study, completed in 2020, designed to highlight key clinical research questions for the care of children with neurodisability and medical complexity.

The series is led by complex care pediatricians Dr. Eyal Cohen and Dr. Catherine Diskin from the Hospital for Sick Children (SickKids) in Toronto, Canada, and Dr. Rishi Agrawal from Lurie Children's Hospital of Chicago, as well as Family Voices representatives Nora Wells, Cara Coleman, and Kate Robinson. 

Family caregivers, youth, and friends of children with medical complexity (CMC) are welcome to join along with health care professionals, researchers, policy makers, and anyone invested in advancing clinical care in CMC.

Accreditation Statement
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of Northwestern University Feinberg School of Medicine and University of Toronto/Sick Kids Hospital. The Northwestern University Feinberg School of Medicine is accredited by the ACCME to provide continuing medical education for physicians.

Credit Designation Statement
The Northwestern University Feinberg School of Medicine designates this live activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Credits are only awarded upon completion of the evaluation survey distributed at the end of each seminar.


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