SAINT JOHN – People with complex care needs represent a small percentage of the population; however, they are a cohort of high users of the healthcare system and its related services. These individuals are also vulnerable to gaps in care as they go through transitions between providers, stages of the illness, and settings. As a result, finding their way through the various systems of care can be difficult.
To address these issues, a team of researchers, decision makers, clinicians, trainees, community groups, and patients affiliated with the Centre for Research in Integrated Care (CRIC) at the University of New Brunswick (UNB) in Saint John are working with families to help them navigate the healthcare system and connect with resources available in New Brunswick and beyond.
The team, which also includes experts from across Canada, has been chosen by the New Brunswick Health Research Foundation (NBHRF) as the team for the month for July.
CRIC was created last fall by a team of experts from various disciplines already working together on various projects related to innovative solutions in integrated care. The projects focus on improving the coordination of health, education, social and community services, as well as improving timely diagnoses and removing barriers to quality care.
“There are ongoing research projects being championed by different health stakeholders and research experts across the province, targeting patients with complex care needs. The rationale for developing the centre was to provide a platform for the integration of research initiatives focused in this area of study and ensure effective collaboration among key stakeholders,” said CRIC Director, Dr. Shelley Doucet.
“This would allow us to align the work that we’re doing and help get the word out about the research we’re involved in and to potentially find new collaborators and new trainees interested in working in our lab. We thought going forward that it would help attract partnerships with people outside the province as well.”
One of the key projects that CRIC is working on is NaviCare/SoinsNavi, a research-based centre aimed at supporting children and youth with complex care needs, as well as their families and care providers, to navigate health services and educational resources across our province. The project serves young people with various conditions.
“Complex care needs is as broad as it sounds,” said research associate Dr. Alison Luke. “Families can call if a child has a diagnosis or without a diagnosis…the typical case would be families with children with a diagnosis of autism trying to navigate services and resources across the education, social services and as health system. We also have families who call with children who have rare genetic disorders, with mental health issues – it really is a broad spectrum of different conditions that qualify.”
NaviCare/SoinsNavi has been helping families since 2017 after a province-wide assessment showed a need for navigational support. Now CRIC is continuing the implementation and evaluation of the project.
Using a living lab model, CRIC can quickly make changes to their services based on new research findings. For instance, when NaviCare/SoinsNavi launched, it was aimed at children and youth under the age of 19. But when the team found that those transitioning from pediatrics to adult services also need navigational help, the CRIC team changed the maximum age to take part in the centre to 25 years old.
In addition, the living lab approach means students and trainees working on the project will get to apply their research findings right away, says Luke. “Everything they’re working on is very dynamic, it’s being rolled out in real time so that makes it quite a special environment,” she said.
The large number of students coming from different disciplinary backgrounds, in addition to the diverse backgrounds of the core team members, also add to the learning experience, Doucet said.
“This summer, we hired 13 undergraduates and graduate summer students full-time to work within our lab. They are all working on various projects related to integrated care and it’s very much an experiential learning opportunity for the trainee to be learning not just from us as mentors, but also from one another who all come from different disciplinary backgrounds.”
The lab has people coming from disciplines like nursing, sociology, psychology, healthcare services research, occupational therapy, medicine, engineering, bioscience, political science and others.
“That creates a really interesting and fertile environment where a lot of creative ideas can happen,” Luke said. “They’re not just learning from us, they also learn from each other, and we learn from them because they bring their different experiences and backgrounds themselves.”
Doucet said the interdisciplinary nature of the work requires people from different backgrounds to collaborate. “We’re trying to inform policy, future research, and practice. The research questions that we are trying to answer are so complex that they can’t be answered by one discipline alone,” she said.
“When we think about integrated care, it’s very complex. It’s individuals with complex needs, and it’s navigating complex systems across settings, levels of care, even across sectors. To address research questions in this area, we need to be working with people who come from different disciplines, from different settings and sectors,” she added.
Most importantly, the team works with patients and their families. “It’s our main priority,” Doucet said.
In the NaviCare/SoinsNavi project, for instance, a team of more than 30 clinicians, trainees, researchers and family representatives oversee its implementation and evaluation. Families have been engaged since the development stage of the centre to ensure that NaviCare/SoinsNavi meets patients’ needs.
A Family Advisory Council consisting of seven volunteers across the province meet monthly to advise the researchers, staff and patient navigators. They are the parents of children or youth with complex care needs or those who have experience growing up with such needs. The council also has their own projects, including creating resources for families and caregivers, as well as developing and delivering workshops to care providers.
The living lab approach eliminates the perceived barriers between researchers and society, making way for an environment that enhances idea development, examines applied solutions to key societal issues and prioritizes synergies between stakeholders.
New Brunswick being a small province, the team approach also helps researchers maximize resources, decrease duplication of efforts and promote knowledge sharing. Building and managing a large and diverse team whose members aren’t all based in the same area could be challenging, but Doucet said her team uses various video conferencing technologies, as well as face-to-face meetings throughout the year.
In the future, CRIC wants to move towards more solutions for other age groups, including adults and seniors. “Our biggest direction going forward is to really expand the work that we’re doing across the life span,” Doucet said.
Currently, they are working on implementing case managers in primary care clinics across New Brunswick and in four other provinces for adults with complex care needs. By having a case manager assigned to each patient, they can develop a collaborative care plan that involves the entire team. The team is also conducting research that aims to improve how PCPs diagnose and support persons with dementia and their care partners.
“Our ultimate aims is to help reduce the inappropriate usage of the healthcare system and improve health outcomes,” Doucet said.
This story was sponsored by the New Brunswick Health Research Foundation.
Banner photo: Collaborative group picture, left to right: Monique DePippo, Victor Szymanski, Dr. Shelley Doucet, Monique Cassidy, Krystal Binns, Amy Reid, Dr. Alison Luke. Image: Submitted.