Informing the collection and use of disaggregated data

UBC Health and its partners are committed to being part of ongoing conversations about the collection and use of disaggregated data. In response to the BC’s Office of the Human Rights Commissioner report Disaggregated demographic data collection in British Columbia: The grandmother perspective, UBC Health has been hosting a series of discussions about the responsibilities of researchers and UBC as an institution around the collection and use of disaggregated data.

By convening researchers and community members through the Disaggregated Data Dialogue Series, we are advancing our collective understanding about how disaggregated data can be used to address inequalities and advance human rights.

The 250 participants in these discussions conveyed the message that clear guidelines are needed for researchers and institutions as they work with communities and consider collecting race-based and other sensitive data. In response, UBC Health completed an environmental scan of resources that are guiding researchers to collect data that will seek parity in outcomes for Indigenous and historically, persistently, or systemically marginalized populations.

This initiative demonstrates the importance of university-community partnerships and meaningful engagement for informing the responsibilities of researchers and the university as they work with diverse communities.

UBC Health is collaborating with the research community to identify and synthesize resources that can support researchers in applying respectful and equity-addressing principles in the collection and use of disaggregated data. Results will be shared through future sessions of the Disaggregated Data Dialogue Series, with the intent of creating a set of evolving best practices for disaggregated data.

Strategic Objectives

This initiative advances the following UBC Health strategic objectives:

• Data infrastructure: Contribute to provincial efforts to develop an integrated health research data infrastructure
• Public and patient engagement: Expand engagement to advance diverse community priorities, enhance learner experiences, and align research activities
• Evidence for new approaches: Help align university and sector activities to establish evidence for new approaches to health

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