Chapter 2: Data for Equity?

Author Biographies

LLana James, PhD Candidate

Department of Biomedical and Molecular Sciences, School of Computing, Queen’s University

LLana James develops and implements interventions to improve clinical outcomes, population health, and data management systems including the Research, Evaluation, Data, and Ethics Protocol for Black populations, Canadian Edition a.k.a REDE4BlackLives Protocol, with the tireless support of Dr. Ciann Wilson. She critically appraises current practices, and seeds new ethical futures; undoing the known, but often ignored issues and emergent harms of artificial intelligence (AI) and machine learning (ML) applications in medicine, healthcare, and public health that undermine human rights, and harm Black populations. LLana’s multi-pronged, transdisciplinary, collaborative research occurs at the intersections of AI, ML, data, law, and intervention science and grapples with the historical and ongoing effects of colonization on Black Indigenous life globally. As a Black woman of the diaspora born in Canada, of ancestry indigenous to Africa and the America’s, via the Caribbean, love and apocalyptic forces unleashed by transatlantic slavery. LLana is the Chair of the Ontario Black Bioethics Reference Group, leads the Personal Health Information, Justice and the Law Network, Chairs the Canadian Race Correction De-adoption Working Group, and is the Co-Chair of the Canada-US Coalition to End Race-correction in Healthcare. As a result of her ground-breaking work, LLana is the AI, Medicine and Data Justice Post-Doctoral Fellow at Queen’s University, her doctoral training, took place at the University of Toronto, Faculty of Medicine.

Dr. Robyn K. Rowe, PhD

Health Data Research Network Canada and Institute for Clinical and Evaluative Sciences

Dr. Robyn K. Rowe is a mother of four, a member of Matachewan First Nation, and a hereditary member of Teme Augama Anishnabai. She holds a PhD in rural and northern health from Laurentian University with her dissertation entitled The Fires we Keep: Honouring the land through Indigenous-led Resistance, Sovereignty, and Data. Robyn is an Executive Member of the Global Indigenous Data Alliance (http://www.gida-global.org) and was involved in the co-creation of the ‘CARE Principles of Indigenous Data Governance’ with Indigenous partners from around the world through the International Indigenous Data Sovereignty Interest Group as part of the Research Data Alliance (www.rd-alliance.org). Robyn is also the Indigenous Data Team Lead at Health Data Research Network Canada (www.HDRN.ca) and a Staff Scientist at ICES (www.ICES.on.ca). Robyn’s work intersects in the areas of Indigenous health and policy, Indigenous data governance and sovereignty, and social and environmental justice. Robyn’s continued research efforts focus on decolonizing health data environments through the assertion of inherent Indigenous rights and interests.

Dr. Robert W. Smith, DPhil

Division of Social and Behavioural Health Sciences, Dalla Lana School of Public Health, University of Toronto

Dr. Robert W. Smith is a second-generation Canadian settler of English and Lithuanian ancestry grateful to live, work, and learn on the traditional territory of Lac Seul First Nation in what is now called Sioux Lookout, Ontario. He is an Assistant Professor (Status-Only) at Dalla Lana School of Public Health and public health practitioner working to collaboratively lead the creation of health systems with which everyone has an equitable opportunity for wellbeing. Rob is a social epidemiologist and applied health systems researcher by training, holding a Doctor of Philosophy in Population Health from the University of Oxford.

Chapter Overview

This chapter was written to serve as a critical and conventional overview of socio-legal, ethical, epidemiological, and policy dimensions of data in the health sector as it pertains to real-world contexts, versus the sanitized idealistic narratives bombarding us. This chapter encourages learners to evaluate their taken-for-granted assumptions about what data is, how it comes to be, and why it is being touted as a tool for equity. More importantly, this chapter seeks to engage learners as active participants.

To support active learning and thoughtfulness, each section header is stated as a question to help learners develop the critical thinking skills necessary for identifying and peeling back the layers of existing and emergent datascapes. This is an opportunity for learners to investigate the way language is seeded by powerful private and public actors and institutions to shape the narrative. For example, the uncertain practice of making forecasts has been renamed and repackaged as prediction and precision, a term that improperly implies certainty and infallibility. This chapter will facilitate learners in decoding and challenging the obscuration of the facts that undermine their ability to think and act ethically, accountably, and responsibly, regardless of what stage they are at in their education or career.

Learners will learn to understand data in context, located in the historical present, that is simultaneously unchanging, yet dynamic. This chapter offers an opportunity to engage and understand the deep historical relationships between contemporary data efforts, the proposed benefits, and test the claims that imply acquiring data leads to change in health systems and equity.

As opposed to a definitive guide on if or how data can or should be used to promote health equity and justice, this chapter puts learners in conversation with contemporary discourses. In order to do so, we will recap key historical facts and context (See Section 1: Data and Measuring Health Equity and Section 3: Indigenous Data Sovereignty).

Section 1: Data and Measuring Health Equity: Before describing the basics of how data is currently and commonly used to measure health inequities, we situate the topics of data, equity, and justice within the context of past and present systems of power responsible for racist violence, genocide, femicide, environmental injustice, and wealth accumulation in what is now called North America.

Section 2: Health Systems, Equity, and Population Health Management: We describe health policy movement towards “Population Health Management" as a strategy for building equity into health systems.

Section 3: Indigenous Data Sovereignty: We offer a pathway of the words, roles, and principles that are necessary to more meaningfully understand the significance of Indigenous Data Sovereignty and its activation within health systems.