Seasonal Newsletter - Spring 2022
Each season the Indigenous Data Team (IDT) and the Inclusion, Diversity, Equity, and Accessibility (IDEA) Team at Health Data Research Network Canada will release a newsletter with updates on Team initiatives, joint collaborations, and much more!
Why are you here?
Data has become a commodity. There is a growing need to understand how digital spaces, infrastructures, and the people that control them impact the people whose data are being collected and used.
As with other extractive processes, the collection and use of data have inequitable and often negative impacts on already systematically marginalized individuals and communities. Within the health sector, access to appropriate medical care, lifesaving and enriching treatments, and other social services have been inequitably distributed and ultimately driven by colonialism, racism, gender discrimination, ableism, and other forms of oppression.
As a result, systems that are supposed to protect us and keep us healthy continue to have inherent issues that are baked into the ways that data are collected and used, the ways that research teams are assembled to analyze and interpret health data, and the way results are interpreted.
In response, priorities around the data rights and interests of culturally and linguistically diverse people in Canada are expanding! For example, movements that support anti-racism and anti-oppression for Indigenous Peoples and Nations, Black Peoples, Peoples of Colour, and People with Disabilities are advocating for systemic changes across every sector, including those related to personal data and information.
At Health Data Research Network Canada (HDRN Canada), there is an Indigenous Data Team (IDT) and an Inclusion, Diversity, Equity, and Accessibility (IDEA) Team. Dr. Robyn Rowe is the Chair of the IDT and Dr. Amy Freier is the Chair of the IDEA Team. While both the IDT and IDEA have their own unique priorities that are rooted in different laws, policies, action plans, and movements; there exists a space between them where initiatives overlap.
Grounded in anti-racism, anti-oppression, and anti-colonialism, the IDT and IDEA Team, have the common goal of addressing diverse population self-determining rights and interests over health data in order to leverage data for improved health equity, Indigenous Data Sovereignty, and Nation rebuilding.
Data, research, and reporting that are inclusive, diverse, equitable, and accessible (IDEA) to people of all backgrounds, identities, and abilities create opportunities for critical, innovative, and systemic level change. Environments that support IDEA fuel the co-creation of knowledges and the advancement of priorities that matter to the people who are represented in the data.
Importantly, strategies that support anti-racism and anti-oppression must also make the space for Indigenous-led data initiatives that advance the unique and inherent rights of Indigenous Nations. Advancing human and Indigenous-specific rights means creating data structures that advocate for both IDEA and Indigenous Data Sovereignty.
Data for Equity? as a Question, Not an Answer
There is a significant amount of work yet to do to understand how data is biased and how it can perpetuate bias. In joining our efforts and making this newsletter, the Indigenous Data Team and the IDEA Team do not want to perpetuate a false sense that data can, unequivocally, be used to advance equity. Herein we are not proposing a standard set of answers or procedures that will make secondary data use equitable. Rather, we are committed to questioning where data comes from and what biases are inherent to its collection and use. Where appropriate we will offer methods, tools, theories, etc. for data research with these limitations in mind.
Amy Freier, PhD
Dr. Amy Freier (she/her) is a woman, a researcher, and a person with a disability. She holds an M.A. in Cultural Studies from Queen’s University and a Ph.D. in Media Studies from Western University. Dr. Freier is the Chair of the Inclusion Diversity Equity and Accessibility (IDEA) Team at HDRN Canada and a Research Associate at the Manitoba Centre for Health Policy. As an interdisciplinary scholar, Dr. Freier’s work has focused on human rights and the different ways human rights become visible: within institutions, within relationships, and within data and data research. She is passionate about the potential for transformation in health data research where a focus on IDEA is met with purpose and commitment.
What we are up to...
The IDT and IDEA Team individual and joint priorities seek to question whether and how data can be used to advance equity. We also aim to increase knowledges and perspectives on how Indigenous and diverse individual-level data are governed and protected. A few of the things that we are working on together include:
- Start a dynamic resource library that will be shared through the seasonal newsletter and available on the HDRN Canada website.
- Initiate internal and external conversations about the origins, uses, and future capacities of data and whether data can be used to advance equity.
- Build lasting and trusting relationships with diverse members of the public.
- Co-create research and writing opportunities that advance Data for Equity and Indigenous Data Sovereignty.
What we have done together so far...
Individually, the IDT and IDEA Team are expanding! Both Teams have individual plans for how to engage members who are part of HDRN Canada and the extended network. We hope to have rich discussions that will expand our vision collectively for the future!
In the meantime, we are proposing updates to the HDRN Canada website to increase awareness around our joint initiatives and begin posing “Data for Equity?” as a public question. These updates will provide rich information to the public, which will hopefully lead to the development of new relationships and discussions that support our collective initiatives.
A public resource library devoted to our joint initiatives will be added to the HDRN Canada website as well! A variety of resources relevant to Indigenous and diverse data will be easily accessible and shareable.
We have also been working on this Newsletter! We are deeply invested in ensuring that the diverse needs of a diverse public are part of the discussions for how our health data is used, accessed, stored, and more. To do this, we aim to increase communication and build connections. Some of the things we will communicate include updates, plans for the future, and details about relevant upcoming events.
Do not hesitate to share this newsletter, subscribe to our mailing list for future communications, and contact us if you are interested in getting involved in discussions on Data for Equity and Indigenous Data Sovereignty.
Growing a Resource Library
British Columbia’s Office of the Human Rights Commissioner. (2020). Disaggregated demographic data collection in British Columbia: The grandmother perspective. Vancouver, BC.
Carroll, S. R., Garba, I., Figueroa-Rodríguez, O. L., Holbrook, J., Lovett, R., Materechera, S., … Hudson, M. (2020). The CARE Principles for Indigenous Data Governance. Data Science Journal, 19(1), 43. DOI: http://doi.org/10.5334/dsj-2020-043.
Eubanks, V. (2018). Automating inequality: How high-tech tools profile, police, and punish the poor. St. Martin's Press. [Book]
First Nations Information Governance Centre. (2020). First Nations data governance strategy.
General Assembly Resolution 217 A. (1948). Universal declaration of human rights. UN General Assembly, 302(2), 14-25.
Are you looking for more information on our ‘Data for Equity?’ initiatives?
Are you interested in learning more about the work that the Indigenous Data Team and the IDEA Team are doing at HDRN Canada?
Do you have resources or opportunities that you would like to share?
We want to hear from you!