Realizing the Promise of Disaggregated Data and Analytics for Social Justice Through Community Engagement and Intersectoral Research Partnerships

Authors

  • Angela Kaida Simon Fraser University
  • Jillian Anderson Simon Fraser University
  • Christine Barnard Université Laval
  • Lyn Bartram Simon Fraser University
  • Daniel Bert Women and Gender Equality Canada
  • Sheelagh Carpendale Simon Fraser University
  • Charmaine Dean University of Waterloo
  • Donald Estep Simon Fraser University
  • Josephine Etowa University of Ottawa
  • Maya Gislason Simon Fraser University
  • Genesa Greening BC Women's Health Foundation
  • Mehrdad Hariri Canadian Science Policy Centre
  • Dawn Hoogeveen Simon Fraser University
  • Dalya Israel WAVAW Rape Crisis Centre
  • Am Johal Simon Fraser University
  • Angel Kennedy Simon Fraser University
  • Kwame McKenzie Wellesley Institute
  • Ruby Mendenhall University of Illinois Urbana-Champaign
  • Nahed Mourad Young Women's Christian Association Canada
  • Valerie Nicholson BC Centre for Excellence in HIV/AIDS
  • Kelly Nolan Simon Fraser University
  • Zoe Osborne Simon Fraser University
  • Fred Popowich Simon Fraser University
  • Alexa Reedman University of Ottawa
  • John Simpson Compute Canada
  • Julia Smith Simon Fraser University
  • Malinda Smith University of Calgary

DOI:

https://doi.org/10.15402/esj.v8i4.70792

Keywords:

Disaggregated data, Community engaged scholarship, partnerships, science policy, social justice, inequity, big data

Abstract

In Canada, community and policy leaders have issued urgent calls to collect, analyze, and mobilize disaggregated data to inform equity-oriented initiatives aimed at addressing systemic racism and gender inequity, as well as other social inequities. This essay presents critical reflections from a national Roundtable discussion regarding how meaningful community engagement within academia–community–government research collaborations offers the opportunity to harness disaggregated data and advanced analytics to centre and address the priorities of equity-deserving and sovereignty-seeking groups. Participants emphasized four key priorities: (1) Building equitable and engaged partnerships that centre community-driven priorities and address structural barriers to community engagement; (2) Co-creating ethical data governance policies and infrastructure to support community data ownership and access; (3) Stimulating innovation and pursuing community involvement to create contextualized, advanced analyses and effective visualizations of disaggregated data; and (4) Building the capacity of all partners to effectively contribute to partnership goals. Capacity building was viewed as a bridge across a diversity of lived and professional expertise, enabling intersectoral research teams to collaborate in culturally safe and respectful ways. Beyond identifying key structural barriers impeding the promise of disaggregated data, we present practical opportunities for innovation in community-engaged scholarship to address social justice challenges in Canada. 

Author Biographies

Angela Kaida, Simon Fraser University

(corresponding author) is a Professor in the Faculty of Health Sciences at SFU. She held a Canada Research Chair in Global Perspectives on HIV and Sexual and Reproductive Health from 2012-2022. She was the Scientific Director of SFU’s Equity Data Commons. Email: kangela@sfu.ca 

Jillian Anderson, Simon Fraser University

is a Big Data analyst at SFU’s Research Computing Group. 

Christine Barnard, Université Laval

is the Executive Director of ArcticNet. 

Lyn Bartram, Simon Fraser University

is a Professor in the School of Interactive Art and Technology at SFU. She is also the Director of the Vancouver Institute of Visual Analytics. 

Daniel Bert, Women and Gender Equality Canada

is a Research Analyst at Women and Gender Equality Canada. 

Sheelagh Carpendale, Simon Fraser University

is a Professor and holds a Tier 1 Canada Research Chair in Data Visualization at the SFU School of Computing Science. 

Charmaine Dean, University of Waterloo

is the Vice-President, Research and a Professor in the Department of Statistics and Actuarial Science at the University of Waterloo. 

Donald Estep, Simon Fraser University

is a Professor in the Department of Statistics and Actuarial Science at SFU. He holds a Research Chair in Computational Probability and Uncertainty Quantification and is the Director of the Canadian Statistical Sciences Institute. 

Josephine Etowa, University of Ottawa

is a Professor in the Faculty of Health Sciences and School of Nursing at the University of Ottawa. 

Maya Gislason, Simon Fraser University

is an Associate Professor in the Faculty of Health Sciences at SFU. 

Genesa Greening, BC Women's Health Foundation

is the Founder and CEO of the BC Women’s Health Foundation. 

Mehrdad Hariri, Canadian Science Policy Centre

is the Founder and CEO of the Canadian Science Policy Centre. 

Dawn Hoogeveen, Simon Fraser University

is a University Research Associate in the Faculty of Health Sciences at SFU.

Dalya Israel, WAVAW Rape Crisis Centre

is the Executive Director of the WAVAW Rape Crisis Centre. 

Am Johal, Simon Fraser University

is the Director of SFU’s Vancity Office of Community Engagement. 

Angel Kennedy, Simon Fraser University

is a Research Coordinator/Manager in the Faculty of Health Sciences at SFU. 

Kwame McKenzie, Wellesley Institute

is the CEO of the Wellesley Institute and Director of the Health Equity Centre for Addictions and Mental Health. He is also a Professor in the Department of Psychiatry at the University of Toronto. 

Ruby Mendenhall, University of Illinois Urbana-Champaign

is an Associate Professor in the Departments of Sociology, African American Studies, Urban and Regional Planning, and Social Work at the University of Illinois Urbana-Champaign. She is the Associate Dean for Diversity and Democratization of Health Innovation at the Carle Illinois College of Medicine. 

Nahed Mourad, Young Women's Christian Association Canada

is a Bilingual Research Coordinator with the Young Women’s Christian Association Canada 

Valerie Nicholson, BC Centre for Excellence in HIV/AIDS

is an Indigenous Elder and Community Research Associate. 

Kelly Nolan, Simon Fraser University

is the Strategic Partnerships Manager at SFU’s Partnerships Hub. 

Zoe Osborne, Simon Fraser University

is a Community-Based Research Coordinator in the Faculty of Health Sciences at SFU. 

Fred Popowich, Simon Fraser University

is a Professor of Computing Science at SFU and the Scientific Director of SFU’s Big Data Hub. 

Alexa Reedman, University of Ottawa

is a Research & Partnerships Manager at ArcticNet. 

John Simpson, Compute Canada

is the Senior Director of Strategic Initiatives at Compute Canada. 

Julia Smith, Simon Fraser University

is a University Research Associate in the Faculty of Health Sciences at SFU. 

Malinda Smith, University of Calgary

is a Professor in the Department of Political Science at the University of Calgary. She is also the Vice-Provost (Equity, Diversity, and Inclusion). 

References

The Black Health Equity Working Group. (2021). Engagement, governance, access, and protection (EGAP): A data governance framework for health data collected from Black communities. https://blackhealthequity.ca/wp-content/uploads/2021/03/Report_EGAP_framework.pdf

British Columbia’s Office of the Human Rights Commissioner. (2020). Disaggregated demographic data collection in British Columbia: The Grandmother perspective. https://bchumanrights.ca/publications/datacollection/

The First Nations Information Governance Centre. (n.d.). The First Nations Principles of OCAP®. https://fnigc.ca/ocap-training/

Hoogeveen, D., Williams, A., Hussey, A., Western, S., & Gislason, M. K. (2021). Sex, mines, and pipelines: Examining ‘Gender-based Analysis Plus’ in Canadian impact assessment resource extraction policy. The Extractive Industries and Society, 8(3), 100921. https://doi.org/10.1016/j.exis.2021.100921

Kaida, A., Carter, A., Nicholson, V., Lemay, J., O’Brien, N., Greene, S., Tharao, W., Proulx-Boucher, K., Gormley, R., Benoit, A., Bernier, M., Thomas-Pavanel, J., Lewis, J., de Pokomandy, A., & Loutfy, M. on behalf of the CHIWOS Research Team. (2019). Hiring, training, and supporting peer research associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV. Harm Reduction Journal, 16. https://doi.org/10.1186/s12954-019-0309-3

Loutfy, M., de Pokomandy, A., Kennedy, V. L., Carter, A., O’Brien, N., Proulx-Boucher, K., Ding, E., Lewis, J., Nicholson, V., Beaver, K., Greene, S., Tharao, W., Benoit, A., Dubuc, D., Thomas-Pavanel, J., Sereda, P., Jabbari, S., Shurgold, J. H., Colley, G., … Team, C. R. (2017). Cohort profile: The Canadian HIV women’s sexual and reproductive health cohort study (CHIWOS). PloS One, 12(9), Article e0184708. https://doi.org/10.1371/journal.pone.0184708

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Published

2023-04-14

How to Cite

Kaida, A., Anderson, J., Barnard, C., Bartram, L., Bert, D., Carpendale, S., … Smith, M. (2023). Realizing the Promise of Disaggregated Data and Analytics for Social Justice Through Community Engagement and Intersectoral Research Partnerships. Engaged Scholar Journal: Community-Engaged Research, Teaching, and Learning, 8(4), 57–71. https://doi.org/10.15402/esj.v8i4.70792

Issue

Section

Reports from the Field

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