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Patients as partners

More than $9.7-million investment to include patients in health research for the better

By Melissa Ennis

An infusion of funding is allowing a team of Memorial researchers to continue working with patient partners to improve the health of Canadians.

On Wednesday, July 13, the Canadian Institutes of Health Research, announced a combined investment of more than $9.7 million over five years from the Government of Canada and the Government of Newfoundland and Labrador to support the ongoing work of patient-oriented research through the province’s SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit.

Since 2014, the Newfoundland and Labrador SPOR SUPPORT Unit, called N.L. SUPPORT, which is based at Memorial, has supported local researchers to conduct patient-oriented research (POR).

“Canada’s Strategy for Patient-Oriented Research is changing the way we include patients in health research for the better.” — Dorothy Senior

The Government of Canada will provide over $4.8 million to N.L. SUPPORT over a five-year period (April 2021 to March 2026) to further its work in POR through greater collaboration between jurisdictional SUPPORT units and other research groups funded by SPOR.

The Government of Newfoundland and Labrador will match that funding, also providing more than $4.8 million over five years – a continuation of the support that was provided to the unit during the first phase of the initiative.

Patients as partners

SPOR is a Canadian Institutes of Health Research initiative that supports various entities to build capacity for patient-oriented research in Canada, which focuses on engaging patients, their caregivers and families as active partners who help shape health research.

The funding will allow N.L. SUPPORT to build on the engagement of patients as partners in research with a greater focus on equity, diversity and inclusion, and to ensure that research evidence informs health-care practice and health-system innovation and transformation.

Dr. Brendan Barrett, professor of medicine (nephrology), Faculty of Medicine, is N.L. SUPPORT’s principal investigator.

“While great strides have been made by SPOR SUPPORT units and researchers across the country, system and culture change takes time,” said Dr. Barrett. “We are so pleased to be receiving this funding that will help us develop a sustainability plan and continue our work building a culture of patient-oriented research in Newfoundland and Labrador.”

Dr. Neil Bose, vice-president (research), says the investment will strengthen critical health-related research led by teams from Memorial.

“Investments in health innovation lead to better patient outcomes and address health-care challenges affecting our province, country and world,” he said.

“The support from the Canadian Institutes of Health Research will empower Memorial’s multidisciplinary researchers to work with patient partners, allowing them to advance critical studies that have a real impact on health-care delivery. Congratulations to Dr. Barrett and his team as they continue this important work.”

Core components

In this next phase, N.L. SUPPORT will focus on equity, diversity and inclusion in its work to help facilitate the quality, relevance and impact of research.

To help achieve this, the unit’s governance structure will include representation from researchers, trainees, patients, Indigenous communities and organizations, health-care professionals and health-system administrators.

Over the five-year period, the core areas of work will involve ensuring timely access to data for researchers; supporting research that builds health-care best practices; increasing local capacity for patient-oriented research; and ensuring patients are meaningfully engaged.

Together with its lead program, Quality of Care N.L., N.L. SUPPORT will also continue to work with patient partners to improve the health-care services provided to the people of Newfoundland and Labrador.

Acting as a catalyst within a learning health system – a structure in which all players work together to generate knowledge and continually improve care – N.L. SUPPORT and Quality of Care N.L. will work to reduce low-value care, ensuring the right treatment gets to the right patient at the right time.

In fact, the work carried out previously by the unit is estimated to have resulted in cost avoidance for the provincial health-care system of approximately $2.8 million over three years.

Meaningful engagement

N.L. SUPPORT has an established Patient Advisory Council that provides advice and guidance in the determination of patient-oriented research priorities, the engagement of patients in research projects and planned public outreach activities.

Screen shot of members of Patient Advisory Council during a virtual meeting
Some members of the N.L. SUPPORT’s Patient Advisory Council.
Photo: Submitted

“My work as a patient partner has allowed me to contribute to improving patient care, health outcomes and the efficiency of the provincial health-care system,” said Dorothy Senior, patient partner with N.L. SUPPORT.”

“Canada’s Strategy for Patient-Oriented Research is changing the way we include patients in health research for the better.”

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