The Alliance for Healthier Communities is a network of community-governed primary health care organizations. Alliance members serve diverse communities across the province. They share a commitment to advancing health equity through the delivery of comprehensive primary health care.
On April 10, 2020, the Alliance joined 200 organizations in sending a letter to the province calling for the urgent collection of race and socio-demographic data as part of Ontario’s COVID-19 pandemic response. Our members welcomed the Province’s announcement on May 6th that Ontario will begin collecting race and socio demographic data.
Advocates and experts have long called for the collection and use of these data. Inequities leave 3.5 million people in Ontario at risk of poor health. The populations facing the worst health disparities are also among the most marginalized. Advocates contend that collection and use of these data is a crucial step in addressing health disparities and inequities. However, the collection of the data is not in itself the end goal. Black Health experts say that the province must not stop at data collection. It must use these data to reduce disparities and inequitable outcomes. It is imperative that appropriate infrastructure is put in place to facilitate this goal. The collection of these data must not further entrench harms and systemic inequity.
Steps have been taken to facilitate the collection of these data- including the amendment of regulation 329/04 (General) under the Personal Health Information Protection Act, (PHIPA). However, the province is yet to clearly articulate how accountability and responsibility in use of data will be embedded into protocols currently under development. The Alliance is concerned about the failure to meaningfully engage stakeholders in designing strong accountability and data ownership frameworks as critical elements of the implementation process. The province has thus far failed to engage impacted communities, advocates who led calls for the collection of data and key leaders in the healthcare sector. The Alliance is aware that several advisory tables have been convened to filter information back to the province as data collection infrastructure is developed, however, we are deeply concerned about the failure to engage crucial voices at some of these tables, in particular Black health leaders- a population group who have been disproportionately impacted by COVID-19.
The regulatory amendment allows the Institute for Clinical Evaluative Sciences (ICES) and Ontario Health (OH) to disclose personal health information (PHI) to the MOH. While the regulatory amendment will allow for the collection of these data, the province has thus far not articulated how the data will be protected, where it will be held, how it will be used and how it will be shared. The province has also not clearly articulated data disclosure beyond the above named parties. Black communities in particular have expressed concerns about the sharing of data with private entities and the risk of further stigmatizing their communities. Alliance members are deeply concerned about the disclosure of these data beyond the health sector and further harms to already marginalized communities. Furthermore, the province has not clearly articulated how data will be analyzed and used. Data analysis must be led and guided by impacted communities. The province has so far failed to engage researchers and experts from impacted communities. Should the province continue along this path uninterrupted, flawed analysis and stigmatization of already marginalized communities will be the inevitable outcome.
Actions taken by the province to engage stakeholders have been thus far too narrow and lacked strategic scope to ensure no further harm to already marginalized communities. The Alliance urges the province to engage the appropriate communities in co-designing appropriate frameworks. The Alliance also urges the province to ensure data ownership and use principles are developed and endorsed by priority populations including Black and racialized populations, 2S & LGBTQ populations, low income populations and other key stakeholders.
The province’s current data collection strategy lacks both a health equity and an anti-racism lens. In its current iteration, the province’s strategy will replicate systemic harm to marginalized populations. We urge the province to immediately address these concerns and meaningfully engage key voices in the development of data collection and use infrastructure.
The development of data collection, analysis of the data and use protocols must be determined by the communities who will be most impacted. Anything less simply replicates existing systemic and structural inequalities. We look forward to discussing these concerns with you and supporting you in the development of solutions that are acceptable to impacted communities.
Regards,
Adrianna TetleyCEO, Alliance for Healthier Communities