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Online survey seeks forward-looking advice for HDRN Canada & SPOR

No significant visuals Text reads: Have your say. SPOR Refresh Engagement Survey. Health Data Research Network Canada logo is at bottom right.
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HDRN Canada has launched an online survey to gather public feedback as part of the federal government’s Strategy for Patient-Oriented Research (SPOR) refresh. SPOR is an initiative of the Canadian Institutes of Health Research (CIHR), operating since 2011 with a double mandate: centre the priorities and perspectives of patients, caregivers and communities within health research, and accelerate the use of evidence in health policies, services and outcomes.

More than a decade later, the strategy is undergoing a renewal process to ensure it is aligned with current health care and health research realities. CIHR is seeking feedback from patients, researchers, policy and decision-makers, health professionals and Indigenous community partners, as well as the SPOR Network, which will inform SPOR’s future direction. As part of that network, having received $39M in funding from CIHR to develop the SPOR Canadian Data Platform, HDRN Canada is contributing to the SPOR refresh process through an online survey and focus groups.

“We’re asking big questions, like how do we ensure that data-intensive research informs policy and practice while remaining aligned with the values and preferences of the people about whom the data are collected?” ~ Dr. Kim McGrail

The anonymous survey seeks advice on the best ways to support the use of multi-regional data to advance patient-oriented research and improve health and health equity. “We’re asking big questions, like how do we ensure that data-intensive research informs policy and practice while remaining aligned with the values and preferences of the people about whom the data are collected?” said Dr. Kim McGrail, HDRN Canada Scientific Director and CEO. “We also want to hear how we can increase inclusion, diversity, equity and accessibility in multi-regional research, and how best to involve members of the public in the governance and use of health data.”

Other themes canvassed in the survey include how HDRN Canada can best support researchers, given emerging trends and opportunities in multi-regional data research such as artificial intelligence and an increasing variety of potential data sources.  “We want to be responsive to the ways research is evolving in order to attract a broader range of researchers to the possibilities of population-based and linked data,” Dr. McGrail added.

HDRN Canada will host focus groups in February, bringing together volunteers for a dialogue about the interim survey findings. The survey closes on March 1, 2024. If you have any questions about the anonymous online survey or the focus groups, please contact Jannath Naveed at jannath.naveed@hdrn.ca.

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