All about the kids
By Kim Barnhardt
It’s all about the kids and families. That’s the main motivator for child health researchers in Ontario, Canada’s largest province and a powerhouse of health research in Canada. From pediatricians to data geeks and implementation scientists, it’s the young patients and their families that drive them.
“When you have a grumpy day and pass a kid in the corridor, then now you have a purpose to your day,” said Dr. Richard Webster, Scientific Director of the Clinical Research Unitat the CHEO Research Institute and co-lead of The Ontario Child Health Support Unit (OCHSU) with Drs. Dhenuka Radhakrishnan, a pediatric respirologist and Chief Scientific Officer, CHEO Research Institute and Colin Macarthur, senior scientist, SickKids.
OCHSU, a hub for patient-oriented research in child health and an OSSU research centre, is one of the province’s key players in the area. Incorporating researchers at both CHEO in Ottawa and The Hospital for Sick Children (SickKids) in Toronto, and supporting child health researchers across the province, OCHSU serves as a pediatrics research methods centre for patient-oriented research. OCHSU-supported researchers conduct wide-ranging health system research into concussions, the impact of RSV on the health system and more, and includes implementation science to ensure research is put into clinical practice.
Patient partnership is a key to this work, according to Dr. Webster.
“Being involved in OSSU, it’s really made the statisticians and epidemiologists reflect on how to incorporate the patient perspective into research and how we contribute to research,” he said. “When we’re having discussions with pediatricians, we’ll point them, nudge clinician scientists, to incorporate patients into the idea formulation. The scope of the impact has filtered through the whole of the research institute and it’s so impressive.”
From bench – or desk – to bedside
Ensuring the uptake of research into clinical practice is essential, which is where implementation science steps in. It takes research that shows what interventions, practices and treatments work and investigates how to integrate this knowledge at the bedside to improve care and patient health. In other words, change management in a health care context.
A recent symposium, From Innovation to Impact: Advancing Child Health and Healthcare through Implementation Science highlighted innovative implementation science conducted not only in Ontario, but across Canada. Funded by OSSU and SickKids and led by OCHSU’s Dr. Colin Macarthur and Dr. Nicola McCleary, Scientist, Child Health Evaluative Sciences Program at SickKids and Assistant Professor, University of Toronto, the symposium featured a roster of implementation science presentations from identifying diabetes in school-aged children, genome sequencing, alleviating pain in infants in the neonatal ICU (NICU) to de-implementation and more.
“Implementation science is a team sport,” said Dr. Justin Presseau, Program Director and Senior Scientist, Methodological and Implementation Research Program, Ottawa Hospital Research Institute (OHRI) and
Associate Professor, University of Ottawa, whose keynote presentation made a deep dive into implementation science with concrete examples.
The common theme was partnership, engaging various players working together to make change.
“There are multiple levels to think about around “teamness” – it’s better together,” said Dr. Presseau. “OSSU helps with that, bridging and connecting traditional silos: patients, researchers etc. and research teams across province. I feel OSSU is a bridging organization and the team sport needs organizations like OSSU, ensuring people, kids, youth and their families, and support networks, be at the table to ensure what gets put into or taken out of practice.”
That’s where de-implementation science is also critical, cutting down on overuse of, or low-value, procedures or care.
“With the example of overuse of lab tests in specific clinical contexts, when we talk to clinicians, they are concerned about impacts on patient care from reductions in testing, so we focus on that, to make sure their concerns are addressed,” said Dr. McCleary. “It also helps if there’s a way you can implement a change without adding to workloads, or if you can even reduce workloads, if there’s a way you can implement or integrate seamlessly into what’s already being done. When implementing any change, it’s important not to jump to solutions but to take the time to understand their perspectives and to then address their concerns in the change strategies we develop.”
Enthusiasm for the growing interest in implementation science, engagement with patient partners, and the ability to make positive change in the pediatric health sphere are motivators.
“One reason I love my job is people come to me for support and those tend to be clinical teams and those have a good understanding of regulatory environments,” said Dr. Presseau. “Often implementation science scientists become embedded in clinical environments, and then more likely they can be part of the solution.”
Data are critical
Without data, there can be no high-quality research. That’s where GEMINI-Paediatrics comes in. An extension of the GEMINI hospital data network, GEMINI-Paediatrics incorporates pediatric and neonatal hospital data to help improve health care for children across Ontario. Led by Drs. Sanjay Mahant, Peter Gill and Julia Orkin at SickKids, the initiative is funded by the Ontario Ministry of Health and builds on work of the Paediatric Inpatient Research Network (PIRN). The data will inform both research and quality improvement (QI) and has expanded to 30 hospitals, from academic settings in urban centres to community hospitals, a significant strength as about two-thirds of pediatric patients are seen at community hospitals.
“Something like GEMINI doesn’t exist elsewhere in Canada,” said Dr. Mahant. “There is large leadership in Ontario because of its size and ICES is a leader in data integration worldwide.” The integration of hospital data will provide a more holistic perspective for system improvement.
“It allows us to ask and answer clinical questions in a way we couldn’t before, with lab tests, medication orders, and clinical notes. We can ask things like ‘what treatments are most effective? how to study system level problems?’ and provide solutions back to clinicians,” said Dr. Gill. “It’s a way to ask and answer questions germane to clinical care, quality improvement and provide a more complete picture – it functions like a true learning health system that provides data to feed back into the system.”
Priorities for the next two to three years for the hospitals and other partners are focusing on improving care in respiratory illnesses; transitions of care, from hospital to community and from pediatric to adult care; and diagnostic imaging times, with parent and family engagement running through this work.
The researchers credit Dr. Macarthur and OSSU for helping shape their approach to their work.
“I think both OSSU and OCHSU have helped us think about patient partnership and the larger resources available in the [GEMINI-Paediatrics] network,” said Dr. Mahant. “Colin has been so important behind the scenes to our success both from a patient partnership perspective and strategically how we fit into the child health system – they both have been instrumental in our journey and our successes.”
What does the future look like for patient-oriented child health research in Ontario?
“We’re really excited to bring the learning health system to pediatrics, really excited about using this moment where everyone is excited about AI and health system improvement,” said Dr. Webster about what’s next for OCHSU. “We want to improve the foundation of data in pediatric hospitals and expand the successes of CHEO and SickKids, who have both had great success in incorporating patient perspectives into research. We want to expand to support other pediatric hospitals, and also to do some of that patient-oriented research outside hospitals in the community.”
And that’s what they have done, with a community event at the National Gallery in Ottawa where patients could meander through displays of medical projects led by Precision Child and Youth Mental Health, and give ideas and feedback interactively to researchers about the projects.
“That’s taking the research to the people. We’ve done such a good job as our metrics show in hospital and now taking it to the community is really exciting,” said Dr. Webster.
More like this:
PIRN – Research hand in hand with families