HDRN Canada recently released its first five-year Strategic Plan, which revolves around our mission of bringing together people and organizations across Canada for transformative and world-leading health data use.
The focus on “bringing together” acknowledges our belief that we share a vision of using data to improve health and health equity. That vision cannot be achieved by one group in one way – it will take common purpose, collective action, and time.
The focus on “transformative” data use acknowledges that supporting data access and use across all regions in Canada is not a matter of doing what we are doing now faster and with more data. Yes, of course, there are things we can do (and are doing) to speed and smooth the process of requesting data, the transparency of those processes, and the tools that are available for people to plan projects and use data. Moving the dial on health equity will also require change. Transformation requires a reimagination of diverse needs and appropriate supports to work towards our shared vision.
This is why we have such a strong focus on the principles of IDEA – inclusion, diversity, equity and accessibility – and a fundamental commitment to respecting and supporting Indigenous sovereignty, including data sovereignty. “Diversity”, for example, includes opening our research teams and the perspectives we bring to defining topics of interest.
Changing our practices to align with IDEA includes expanding our world views, giving time and space to different ways of knowing, and understanding that data do not speak for themselves. Data can be used to stigmatize, to tell a deficit narrative, to show people as “others”. Data can also be used to demonstrate strength, and to address persistent harms. The latter would be transformational.
HDRN Canada’s Public Advisory Council recently had a discussion about the principles of IDEA and how we are trying to advance those within our network. The comments from that group were insightful and inspiring. There was clear recognition of inequities:
“There is a lot of bias … for example a belief that black women are ‘more able to handle pain’ and thus don’t get appropriate medication”
“We can’t deny statistics that marginalized populations have poorer outcomes and report poorer access to health care services… We are not doing well enough.”
They noted that change is needed, possible and “long overdue”:
“We need to ensure there is a cultural shift – bringing together all who are involved in data collection – government, researchers, hospitals, not-for-profits and for-profit companies, because it’s important that together we improve the care provided to patients through data collection.”
“It’s about intentionality, mindfulness, making a purposeful collective effort to make change”
And they expressed optimism that we can be successful in this:
“While we come from different backgrounds, I think that we are all in Canada and we can find common ground”
“We have the ability to welcome differences at all levels. Differences make us stronger together, when we can understand those differences”
“When you talk about this as a structural thing, we should be able to advance it because we have collective responsibility”
The work we are doing though HDRN Canada, guided by IDEA, acknowledges that collective responsibility. We are grateful for the opportunity to work together, and with all of you, to use data to improve health and health equity.