Dr. Deborah Marshall named to lead Calgary-based part of international study
Canada’s entry into Horizon Europe opened the door to a new level of global research. When that door opened, the University of Calgary was ready, not by chance, but by design.
For Dr. Deborah Marshall , PhD, a professor in the Cumming School of Medicine (CSM) and Svare Chair, Health Economics Value and Impact, that moment marked more than professional recognition. It reflected years of work spent listening to families navigating juvenile idiopathic arthritis (JIA), building trust with patient partners, and advocating internationally for research that measures what matters to patients.
After years of collaborating with European partners and globally connected research programs, Marshall’s research team has been invited to join an international research collaboration to put patient voices at the heart of health-care decisions.
The study, Unifying Framework for Patient-Centred Clinical-study Endpoints Derived from Digital Health Technologies ( UNIFIED ), is a five-year, $43-million Cdn. project. Led out of Eramus University Rotterdam, Netherlands, it includes leading universities, hospitals, patient organizations, clinical guideline organizations, and industry partners from Europe, Canada and the U.S. The result is a defining milestone for UCalgary: its first Horizon Europe Innovative Health Initiative award, placing it alongside leading global institutions shaping the future of patient-centred research.
UNIFIED proposes a bold idea: the development of a harmonized, evidence-based framework that brings together information patients have long asked to be included in health-care decisions. Over the next five years, the consortium plans to create consensus-based guidelines that integrate patient preference information with clinical outcome assessments and digital health technology derived measures, such as wearable sensors and remote monitoring tools.
"It brings patient preferences, clinical outcomes, and digital health measures together in a way that hasn’t been done before, and it creates a clear path for patient voices to shape health-care decisions at every level," says Marshall. "This allows us to turn those voices into evidence that can change how treatments are developed and evaluated around the world, which is exciting."
International research and impact
Marshall and her team have been studying patient perspectives specific to JIA for many years. JIA is a complex chronic disease that dramatically impacts children’s lives, causing pain, stiffness and swelling in their joints. It can significantly diminish a child’s quality of life.
CSM researchers have been part of the precision health program on childhood arthritis, known as UCAN CAN-DU/CURE , since 2017.
Research to date from UCAN CAN-Du/CURE has found impacts on children and families are not just clinical symptoms, but also affect daily life, school, sports, sleep, finances, and family routines. These findings inspired the Producing an Arthritis Value Framework with Economic Evidence (PAVE) project are Diseases , which explores the full breadth of impacts from a patient and family perspective and includes international perspectives.
PAVE partnered closely with patients and families to expand UCAN to co-create a family-focused comprehensive framework of these impacts, which marked a major innovation for the field.
Local and national partners
Cassie + Friends, a Canadian organization supporting children and families living with juvenile arthritis, has first-hand experience with these impacts. Through partnering with UCAN and PAVE and working together with patients, families, and researchers, they have defined, quantified, and validated what parents had been saying for a long time.
"For years, families in our community have been telling us that what matters most to their children isn’t always captured or prioritized in their care and treatments - and for years, Dr. Marshall and her team have listened," says Jennifer Wilson, executive director of Cassie + Friends.
The role of One Child Every Child
SHINE, a project underway within One Child Every Child , has highlighted how JIA affects entire families: out-of-pocket costs, disrupted routines, emotional burden, and the invisible labour of managing a child’s chronic disease. This deep understanding of lived experience and long history of productive partnership with Cassie + Friends allowed Calgary researchers to offer UNIFIED something few centres could: an engaged patient community, an established research infrastructure, and patient-partners who had already defined what matters to them.
UNIFIED receives funding from Horizon Europe , a multi-billion dollar research and innovation funding initiative of the European Union. Horizon Europe is the key research and innovation funding program in the EU and, according to Innovation, Science and Economic Development Canada, the largest of its kind in the world.
"Horizon Europe funding represents one of the most competitive research environments in the world, and participation signals that the university is not only contributing to global conversations on patient-centred care, but also helping shape those conversations," says Dr. William Ghali , MD, associate vice-president (research).
Through UNIFIED, One Child Every Child, Marshall’s team, and the voices of patients who share their experiences, that message is now being translated into a global partnership to enable action in patient-centred care worldwide.
And this is just the beginning.