Black Expert Working Group to Inform National HIV Surveillance

Research and local public health surveillance data have shown that Black communities are disproportionately impacted by HIV in Canada. However, national HIV surveillance data do not contain sufficient race and/or ethnicity information to adequately describe the magnitude of the problem. Systemic racism and discrimination contribute to vulnerability, exposure to HIV, and health system barriers to accessing prevention technologies, testing and care and have also contributed to the data gaps that limit our ability to describe, address, and monitor these inequities. The low quality and completeness of race and/or ethnicity information in the national HIV surveillance data limits the ability to use this data to inform prevention and care programming, funding decisions, and the monitoring of outcomes. A group of Black researchers and practitioners came together in 2022 to advocate for new approaches to research and policy to address Black people's continued disproportionate exposure to HIV. During engagements with the Public Health Agency of Canada (PHAC)’s National HIV/AIDS Surveillance Program (HASS), data quality concerns and opportunities for improvement were discussed. As a result of this engagement, the Black Expert Working Group (BEWG) was launched in Summer 2023. The BEWG will provide advice to HASS and contribute to the co-development and implementation of strategies to improve the completeness of the race and/or ethnicity data. This work will include reviewing the language in national HIV surveillance reports, critically reviewing race and/or ethnicity categories currently in use in Canada, developing data collection scripts and training tools, and building capacity among Black stakeholders for evidence-informed responses to HIV. The BEWG has the potential to support a robust response to HIV among Black communities through community leadership in optimizing the quality, completeness and use of data on HIV