This report both answers and echoes the calls to collect disaggregated data to advance human rights. It emerges from decades of activism—particularly from communities of colour—calling for the data needed to develop policy that effectively addresses systemic inequalities. In other words, it calls—we call—for data that reflects the lived experiences of many, allowing their stories to be amplified and heard clearly by those in power.

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Executive summary

Translations of the executive summary are available in:
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Some 56 per cent of Black Canadians report layoffs or reduced working hours during COVID-19.1

Only 25 per cent of Indigenous communities in B.C. have basic internet access.2

More than 40 per cent of homeless youth are LGBTQ2S+.3

Powerful statements are made possible by disaggregated data.

By making systemic inequalities in our society visible, data can lead to positive change. The same data, used or collected poorly, can reinforce stigmatization of communities, leading to individual and community harm.

On June 16, 2020, Premier John Horgan invited BC’s Human Rights Commissioner and Information and Privacy Commissioner to inform the development of a policy initiative for the collection of race-based, Indigenous and other disaggregated data to address systemic racism. We accepted the invitation and have undertaken a research project over the last two months that included community consultation, an extensive literature review and policy analysis.

Disaggregated data is data that provides sub-categories of information, for example by ethnic group, gender, occupation or educational status. These are sometimes called demographic categories. People tend to provide this form of data through surveys that ask them to identify themselves in relation to these categories or others. This information is then usually anonymized or de-identified—stripped of personal information like name or date of birth—and used in statistical analysis. Unlike aggregated data, which groups information together, disaggregated data can reveal inequalities and relationships between categories.4

This report offers a framework for disaggregated data collection that is grounded in “the grandmother perspective” offered by Gwen Phillips of the Ktunaxa Nation, who is a BC First Nations Data Governance Initiative Champion. Fundamentally, this approach is centred on the importance of relationship:

“First Nations governments are not wanting to operate with the Big Brother mentality that we’ve all been groomed into believing in relation to what data does to us—it’s more like we want to come from the grandmother perspective. We need to know because we care.”

We apply a framework that defines the important difference between tools, process and purpose.5 Disaggregated data is merely a tool (to be utilized depending on the context and aim) and it must be accompanied by a process that supports the purpose of reducing systemic racism and oppression and achieving equity. Without a well-defined and articulated process and purpose, there is more risk of disaggregated data doing harm. Multiple voices emphasize that collecting data on social determinants of inequalities without structural change can perpetuate inequity.6,7,8 After considering the benefits and risks of disaggregated data in this report, we describe the cornerstones of process and purpose in order to achieve the benefits and mitigate against the risks. Without this approach, there is a danger of focusing on the wrong thing. As Gwen Phillips says, “we are not measuring race, we are measuring racism. Racism is a systems failure; that must be made clear when talking about race-based data.” In sum, the framework is as follows:

The process of respectful relationship, where marginalized communities are meaningfully involved throughout the stages of collection, storage, use and distribution of disaggregated data, is critical, and principles and recommendations for government in building respectful relationship (defined as relevant, responsible, reciprocal and reflexive9) form the bulk of this report. This is a shift from control to care, aligned with the grandmother perspective.

There are also concrete, practical aims to centring positive community relationships: response rates to demographic surveys increase when respondents’ communities are engaged in the design and development of disaggregated data collection. At the outcome stage, this also allows for quicker adoption of solutions by impacted communities, whereas paternalistic models tend to have difficulties promoting uptake of their programming.

Further, multiple participants in our community consultations emphasize that relationship change precipitates systems change. We need to do research differently in order to make a difference.

Recommendations

The Anti-Discrimination Data Act

We recommend the development of legislation that is focused on building respectful relationships with marginalized communities to ensure that community needs and voices are meaningfully included in data collection, use and disclosure processes. As experts in their own lives, community members are the ones best equipped to identify priorities and risks in potential data collection projects.

When collecting, using and disclosing disaggregated data, it is important to adequately consider and address both individual harm and community harm. The current legislative framework in B.C. is structured to mitigate individual harm through the protection of individual privacy, but does not adequately consider or protect communities from harms associated with the collection, use and disclosure of disaggregated data, and makes only limited references to “public interest.”10

Our recommendations address this gap by calling for meaningful consideration of community harm and for the creation of an obligation to conduct responsible, equity-supporting research in collaboration with communities. We also call for protections against individual harm to be updated in response to modern challenges to personal privacy. We recommend that the government enact the Anti-Discrimination Data Act (ADDA), which would legislate the collection, use and disclosure of demographic data for social change. We also recommend that the government develop the ADDA in consultation with BC’s Office of the Human Rights Commissioner and the Office of the Information and Privacy Commissioner for British Columbia.

The purpose of the ADDA would be to support the BC Human Rights Code, which was established for structural change, including “to identify and eliminate persistent patterns of inequality associated with discrimination prohibited by this Code.”11 In addition, the ADDA must also serve the purposes of the Poverty Reduction Strategy Act12 and the Declaration on the Rights of Indigenous Peoples Act (DRIPA).13 Social condition (or poverty) and Indigeneity are not currently protected within the BC Human Rights Code but demographic data in relation to these areas is important for identifying and eliminating “persistent patterns of inequality associated with discrimination.”14

The ADDA would also support the B.C. government’s adoption of Gender-Based Analysis Plus (GBA+), which is an analytical tool applied across government to assess differential impacts of policies, programs and initiatives on diverse groups of women, men and gender-diverse people with considerations of intersectional socio-demographic factors such as race, ethnicity, income, age and disability.15

The ADDA builds on B.C.’s existing Data Innovation Program (DIP). The Program’s approach to protecting the disclosure of demographic data across public bodies offers a strong framework that should be reflected in legislation and in practice. DIP is a good model for the analysis of data on equity-related subjects, particularly those that engage potentially sensitive information, such as sexuality, gender, race, substance use or homelessness. This is because it treats de-identified data (no personal identifiers such as name and address) with the same level of confidentiality as personal information. Today’s technology landscape increases the risk of re-identification of de-identified data—in other words, there is a real possibility of data being connected back to the person. DIP’s approach is in line with the trend in privacy legislation to move toward the protection of de-identified data as well as personal information. The program applies the internationally recognized Five Safes model as its privacy and security framework—Safe: People, Projects, Data, Settings, Outputs.

The ADDA would set out a framework for the collection, use and disclosure of disaggregated demographic data and should include provisions that outline:

The introduction of the ADDA should be accompanied by the implementation of a comprehensive training and education program. This will include training for public sector staff administering and analyzing demographic data surveys and a broad public education campaign to increase awareness of the benefits of disaggregated data collection and the enhanced privacy protections associated with these data initiatives.

Data standards

As referenced above, the proposed ADDA includes a mandate to develop data standards to provide guidelines for the collection of data. We also recommend a framework for these data standards, which includes an equity impact assessment process that a data project should comply with in order to be approved. This framework includes three components: defining the purpose of the project, setting up a respectful process, and defining the scope and limitations of the tool (data collection, use and disclosure) with community. The project-specific responses to the assessment tool must then be embedded in an Information Sharing Agreement to provide an adequate and appropriate accountability mechanism for the project in relationship with community.

Immediate targeted opportunities

There is a responsibility to act when missing data can result in a loss of human life. Numbers matter. Ongoing silences in data have harmed the most systemically oppressed communities. While participants emphasized the importance of slowing down and building respectful relationships, they also emphasized that too much focus on research can stall actions that can save lives when communities have already identified clear and present dangers and solutions. While government is establishing the legislative framework to support community data governance for equity-seeking projects, we recommend the immediate collection of disaggregated demographic data in these areas: health care, mental health, policing, corrections, poverty reduction, education, gender-based violence and children and family development.

Next steps

We have learned an enormous amount from community experts through this project. While disaggregated demographic data has significant power to reveal systemic inequalities and lead to positive policy, there are also significant dangers in relation to individual and community harm. To achieve these benefits and avoid the dangers, the Anti-Discrimination Data Act and the associated data standards must embed “the grandmother perspective” of data governance as caring not controlling through the provision of practical, concrete methods of data collection, use and disclosure. Coming full circle, in gratitude for the generous gifts of time and knowledge from communities, we hope this report gives back to communities by providing the framework for a new governance model to ensure the collection, use and disclosure of disaggregated demographic data benefits communities.

We appreciate the opportunity to provide these recommendations to the provincial government at the invitation of the Premier of British Columbia. We look forward to working with the government as it continues in this promising direction to ensure the human rights of British Columbians are protected now and for the future.

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Notes

1. African-Canadian Civic Engagement Council and Innovative Research Group, 2020.

2. Union of BC Indian Chiefs, 2020.

3. True Colors United, 2020. LGBTQ2S+ refers to Lesbian, Gay, Bisexual, Transgender, Queer, Two-Spirited, other gender and sexual minorities.

4. Right to Education, 2017.

5. Meeting with Kwame McKenzie, August 10, 2020.

6. Smith, 1999.

7. Boilevin et al., 2019.

8. Black Public Health Collective, 2020.

9. Thira, Sharon. “July 28th, Note on Theory in Progress, Re-Thinking the Four Rs,” 2020.

10. See for example FIPPA, ss 25 and 35(1)(b).

11. Human Rights Code, s. 3(d).

12. Poverty Reduction Strategy Act, S.B.C. 2018, c. 40.

13. Declaration on the Rights of Indigenous Peoples Act, S.B.C. 2019.

14. Declaration on the Rights of Indigenous Peoples Act, S.B.C. 2019.

15. Government of British Columbia.

16. Based on the model defined within the E-GAP framework: Bailey et al., 2020.

17. Mandating government engagement on the right of the IAP2 spectrum: Collaborate.

DISAGGREGATED DATA: SUMMARY OF RECOMMENDATIONS TO PREVENT HARM TO COMMUNITIES

June 2021

© British Columbia’s Office of the Human Rights Commissioner

British Columbia’s Office of the Human Rights Commissioner (BCOHRC) encourages the dissemination and exchange of information presented in this publication. All material presented in this publication is licensed under the Creative Commons Attribution 4.0 International Licence with the exception of photographs and images, BCOHRC’s logo, any branding or trademarks, content or material provided by third parties and where otherwise indicated.

British Columbia’s Office of the Human Rights Commissioner. Disaggregated data: Summary of recommendations to prevent harm to communities. British Columbia’s Office of the Human Rights Commissioner, 2021. https://bchumanrights.ca/publications/datacollection-harm/.