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“Patient-oriented research” almost sounds like it should be a redundant term, but it reflects a bit of a sea-change in health-related research. As the term suggests, patient-oriented research engages patients, caregivers, and families as partners in the research process, to discover what patients identify as priorities.

The goal, as the Canadian Institutes of Health Research (CIHR) explains, is “to help transform the role of patient from a passive receptor of services to a proactive partner who helps shape health research and, as a result, health care.”

Faculty of Social Work PhD student Brooke Allemang is a passionate believer in the approach.

“I get the sense that it's an empowering experience for youth,” says Allemang, “and it certainly is for me too. I feel so grateful every time I'm entering the room for a consultation with them. At the outset I try to express my gratitude for hearing their voices around what are sometimes very sensitive issues.

"And the ideas about research that they come up with are just so striking! In terms of leveraging technology, for example, these young people are thinking of things I never would have thought about in my research. So, I am learning so much from them and I really look forward to seeing what else I can learn along the way.”

Six-year CIHR fellowship 

Allemang will have plenty of opportunity to learn — and then lead in this important area over the next six years, as she was recently named as the recipient of a CIHR Patient-Oriented Research Transition to Leadership Fellowship.

As Allemang mentioned, she works with young people. Specifically, young people making the transition from paediatric care to adult care within the health-care system. It can be a difficult transition, especially for individuals with a chronic physical condition and a mental health issue.

“It's a really tricky time,” she says, “and often young people fall through the cracks. It's a difficult system to navigate and it happens during a challenging time developmentally, when there are lots of life transitions going on. So my work is focused on what does this group, in particular, need when we're thinking about supporting them to navigate multiple system transitions at once?”

Allemang’s interest in the area began early in her career. Before coming to the Faculty of Social Work at the ��ݮ����Ƶ���� to begin her doctorate, she worked at the Hospital for Sick Children and University Health Network in Toronto where she was hired as the first-ever “transition navigator” essentially helping patients do what she’s been researching ever since – “navigate” from the paediatric system to adult-care services.

“Having to cope with more than one diagnosis at a time can be very challenging,” she says. “Trying to stay on top of a physical health condition which requires you to take medications every day and be in charge of your own care and advocate for yourself is difficult enough as a teenager. When you add a mental health issue on top of that, that can affect things like motivation, it adds to the issue.

I believe we need to think more about how we can better integrate physical and mental health services.

The transition to leadership fellowship is broken into two phases. The first phase provides $165,000 to support her PhD research, under the supervision of Social Work investigator Dr. Gina Dimitropoulos, PhD, and paediatric nephrologist and clinician-scientist Dr. Susan Samuel, MD.

The second phase will support her work as a postdoctoral fellow, where she’ll be able to leverage and share what she’s learned from patients and families to become a leader in the patient-oriented research field. It’s clear this research could be done in a number of ways, or in a number of disciplines. However, Allemang believes social work is the right approach, due to the holistic lens of the profession.

“That's what I love about social work,” she says. “Social work looks at individuals and communities from a holistic lens. How a person's mental and physical health, sources of support, family life, social determinants of health — how they all come together to impact their quality of life in the health-care system and beyond. So I think the social work profession is really the perfect approach to tackle some of these really complex issues.”