New CMAJ supplement on patient engagement includes SickKids collaborations

Does engaging patients in research projects improve health? Engaging Patients in Health Research: the Ontario Experience, a special patient-oriented research supplement in the Canadian Medical Association Journal (CMAJ) released November 7, 2018, aims to answer this question.

The supplement features 17 IMPACT (Innovative, Measurable, Patient-oriented, Appropriate, Collaborative and Transformative) projects funded by the Ontario SPOR [Strategy for Patient-Oriented Research] SUPPORT [Support for People and Patent-Oriented Research] Unit (OSSU). Several projects include collaborations with The Hospital for Sick Children (SickKids).

Youth engagement in the YouthCan IMPACT trial describes a project that was co-designed with youth and involves a stepped care model that integrates community mental health, hospitals (including SickKids), and youth to maximize access and provide evidence-based treatments.

“The YouthCan IMPACT trial is the first randomized controlled trial of integrated service hubs anywhere in the world,” says Dr. Peter Szatmari, Chief, Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health and SickKids. “This trial will assess whether this stepped-care model performs more effectively than the hospital-based model.”

Partnering with families of children with medical complexity to evaluate interventions provides an overview of the partnership between the Provincial Council of Maternal and Child Health in Ontario and SickKids and researchers at Queen’s University to evaluate a new model of care for children with medical complexity.   

“We have created an innovative process whereby patients, their families and their health-care providers choose the outcomes that matter most to them to evaluate the success of this new model of care,” says Dr. Eyal Cohen, Associate Scientist and Program Head, Child Health Evaluative Sciences, Research Institute, and Staff Physician, Division of Paediatric Medicine, SickKids. “Structuring an evaluation according to outcomes prioritized completely by patients’ caregivers (and their clinicians) is a novel extension of the principle of patient partnership in research.”

Engaging parents to research childhood interventions aimed at preventing common health problems, outlines parent involvement in The Applied Research Group for Kids (TARGet Kids!), the largest prospective cohort study of young children in Canada. A collaboration among parents, community-based health-care providers, and researchers at SickKids and St. Michael’s Hospital, TARGet Kids! collects information on important physical, mental health, and educational factors that affect the well-being of Canadian children. The leaders of TARGet Kids! are using feedback from the study participants to shape the focus of further research projects.

“We brought parents and clinicians together and asked them ‘What are the key important unanswered questions to you,’” says Dr. Catherine Birken, Co-Lead, TARGet Kids! “They told us that obesity prevention, promotion of mental health and developing effective parenting tools are key unanswered research questions.”

The PARENT trial (Parenting and Addressing at-obesity Risk Early years iNtervention with home visits in Toronto), a collaboration with Toronto Public Health, evolved from this feedback. Parents are continuing to shape this important study. Learn more by watching this video: