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Institutional and legislative measures exist to offer protection for our personal information. But traditional data governance practices have gaps that we will need to close if we want to be able to use data to improve the fairness of health systems.
As Canada strives to address health inequities, many healthcare institutions are turning to the collection of race-based data. International and even local examples show that such data, if understood and acted upon, can improve health outcomes for racialized communities. Collecting race-based data is complicated by the longstanding concerns that racialized communities have about sharing information. Historical harms and exploitation have led communities to be wary.
A further complication is that data governance approaches are not always as helpful as they could be because they focus on the privacy needs of individuals and less on the impacts of data on a population group as a whole.
A new approach, called community data governance, may help with this problem. If widely implemented, it could enable communities to make decisions about their collective data and to build their trust with the healthcare system.
Community data governance empowers communities to be the leaders – to have more control – over their own data. They get to set the rules for how it is collected and analyzed, and how it is used, kept private and accessed. It also ensures that institutions focus on the issues that the communities themselves consider important.
In this way, community data governance becomes both a safety mechanism, where community members can hold organizations accountable, and a bridge between communities and institutions. Strengthening social participation, connectedness and trust can also, in and of itself, contribute to better health for communities.
Groups across Canada have done important work on community data governance over the past several years. During the early pandemic, for example, the Black Health Equity Working Group established a community data governance approach tailored for Black communities. It produced the Engagement, Governance, Access and Protections (EGAP) framework, which advocates for the creation and ongoing engagement of community governance tables. These tables would decide the necessary rules and restrictions around the collection and use of race-based data.
Frameworks like EGAP are essential to ensuring institutions approach race-based data responsibly. And they are essential to ensuring the institutions get the data – and get out of the data – what they need to advance health equity. Research shows the quality and the completeness of the information that people share is directly linked to the trust they have in the process.
It’s time to democratize health data and place it in the hands of the communities of people who best understand their own lives. A health system in which racialized communities own their own data could fundamentally shift power dynamics, empowering them to shape their own futures.
Categories: Race-based data Tags: community governance, data governance, EGAP, Health data, OCAP, race-based data
Jemal Demeke
Jemal Demeke is a researcher at the Wellesley Institute. He has consistently used his community organizing experience to inform his public health research approaches. His research spans infectious disease epidemiology, implementation science, and equitable health interventions. African, Caribbean, and Black communities have a continued presence in his professional focus. He has founded equity initiatives in large organizations, led workshops to healthcare providers, and built relationships between community stakeholders and health agencies. His work at the Wellesley Institute leverages these experiences to inform policy change for racialized communities across Canada
