COVID-19 Data Reporting Gaps

http://doi.org/10.22215/CURRRG/2020.TracingCOVID19data
Data & Technological Citizenship
(aka public purpose research)
Dec. 1, 2020 | Monthly COGWG Teleconference / *ODJ*| Teams
Dr. Tracey P. Lauriault
Associate Professor, Critical Media and Big Data,
School of Journalism and Communication, Carleton University
Tracey.Lauriault@Carleton.ca
@TraceyLauriault
https://orcid.org/0000-0003-1847-2738

Contents
2
1. Research Team & Collaborators
2. Introduction
3. Objectives
4. Rationale
5. Theoretical Framework
• Critical Data Studies
• Data & Technological Citizenship
• Rights Based Approach to Data
during a Crisis
5. Current Topic Areas
6. References
7. Acknowledgements
8. Other Research

1. What is the Tracing COVID-19
Project?
3

Research Team
4
PRINCIPAL INVESTIGATOR
Tracey P. Lauriault
Critical Media and Big Data, School of Journalism
and Communication, Carleton University
https://orcid.org/0000-0003-1847-2738
RESEARCH ASSISTANT, DESIGN, & COORDINATION
Kit Chokly
Graduate Student, School of Journalism
kitchokly.com
RESEARCH ASSISTANT, OPEN SCIENCE
Amanda Hunter
Graduate Student, School of Journalism
https://www.linkedin.com/in/amanda-hunter-
b0382372/
RESEARCH ASSISTANT, ACCESSIBILITY
Aidan Battley
Undergraduate student in Communications
and Media Studies, Carleton University
linkedin.com/in/aidan-battley-3b1274132/
RESEARCH ASSISTANT, COMMUNICATION
Meelo Fairfax-Angod
Undergraduate Student in Communications and
Media Studies, Carleton University
https://www.linkedin.com/in/meelofairfaxangod/
RESEARCH ASSISTANT, DISABILITY STUDIES
Megan Linton
Graduate Student, School of Public Policy and
Administration, Carleton University
https://www.meganmqlinton.com/
RESEARCH ASSISTANT, FIRST NATION DATA
Kirstei Abbot
Indigenous Student Advisor &
Assistant Program Coordinator
https://orcid.org/0000-0002-0631-5463
COLLABORATOR, FNIGC
Dr. Aaron Franks
Senior Manager, First Nation Information
Governance Centre; to explore the topic of
Indigenous Data Sovereignty and open data
and open science.
COLLABORATOR, FNIGC
Melissa Dane
Research Office, OCAP® and Information
Governance; First Nation Information
Governance Centre, to explore the topic of
Indigenous Data Sovereignty and open data
and open science.
1. Tracing COVID-19 Research Team & Collaborators

Objectives
The project’s objectives are to:
1. Compare official COVID-19 public health data
reports to identify gaps and best practices
2. Identify and support the building of framework
datasets to standardize reporting
3. Analyze data standards and protocols to
support data management, interoperability and
cross-jurisdictional reporting
4. Publish case-studies, resources, archives of
official reporting, and a glossary
5. Rapid research by conducting expert analysis,
peer review, knowledge mobilization and provide
evidence-based recommendations to improve
how data are reported
6. Train students to do rapid response research
and develop a network of experts.
5
Research Results
Datalibre
@Data_Tracing
Started:
March, 2020
Funded by:
Carleton University COVID-19 Rapid
Research Response Grant

Rationale
• Official COVID-19 public health data are inconsistently reported, impeding
comparability, and the ability to assess impact and target actions.
• Data to inform the inequities experienced by Indigenous & racialized
groups are inadequate as are data about people with disabilities, gender
beyond the binary and some classes of labour
• Lack of framework and foundational datasets upon which analysis can be
made – data infrastructure
• There is a lack of standards & protocols in reporting impeding
interoperability
• Need to rapidly report observations and critical data research to advance
and frame public policy about the response
6

Theoretical Framework
The project is theoretically informed by:
1. Critical Data Studies
• Data have social and material shaping qualities and they are
never politically neutral
• Data are inseparable from the people and institutions who
create & own them nor from the practices, techniques, and
infrastructures of their life-cycle
• Data are viewed as a social and technological assemblage
2. Data & Technological Citizenship
• Data & their technologies are political, and actors beyond
government ought to actively be part of the deliberations of
how data are created, managed and used
3. Rights-based approach to the management of data &
technologies
• A pandemic is a crisis, but this does not mean that rights ought
to be waved in the name of efficiency, expediency and
technological solutionism
7

Current topic areas
• Intersectional Empiricism
1. Indigenous Rights & Traditional Knowledge
approaches to data
2. Critical race theory & data
3. Critical gender & feminist theory & data
4. Critical disability studies – social model of disability
& data
• Openness
• Open science
• Open government
• Open data
• Design & Communication
8

http://doi.org/10.22215/CURRRG/2020.TracingCOVID19data 9
Intersectionality and Data Visualization (Chokly & Lauriault)

What kind of demographic data are reported? (Shields & Lauriault)
• Comparative analysis of the data
reported on Official Federal, Provincial
and Territorial Websites (Shields &
Lauriault)
• What kind of demographic data are
reported in official COVID19 reports?
• Age
• sex variables
• labour classifications
• Indigenous, Black and Racialized People
• Disability
10

Disability & COVID-19
• What does a social model of disability of COVID-19 data
reporting look like? (Battley, Linton & Lauriault)
• What are standardized classifications?
• Are official sites accessible?
• What datasets are missing? Datasets on accessible
accommodation and long term dwellings?
• How are people with disabilities classified in CERB? ODSP?
Taxation?
11

Residences for people with disabilities - Megan Linton, Section of MA Thesis in Sociology
Where is the typology?

Open Science, Open Government & Open Data
• What type of open principles should apply to COVID-19
Data and reporting? (Hunter & Lauriault)
• Open by Default?
• How do the principles of FAIR + RDA + OEDC + Open Science +
OCAP apply to COVID-19 Data?
• What principles should be applied to COVID-19 data & what is
missing?
• What does the COVID-19 data lifecycle look like?
• How does official report fare according to these?
13

• Research Questions:
• Are COVID-19 data open in Canada?
• Under what licenses are COVID-19
data made available?
• Are there active open data initiatives
at all levels of government? And are
they publishing COVID-19 Data?
(Federal, Provincial, Territorial)
• Methodology
1. Whether or not the information were
open
2. The License under which the data are
available (which determines how one
can access/reuse the data)
3. Whether or not the respective
province or territory has an open
data mandate
4. Whether or not the respective
province or territory has an open
data portal
• Framework
• Canada’s 2018-2020 National
Action Plan on Open Government,
• Roadmap for Open Science,
• Directive on Open Government
• Model Policy on Scientific Integrity
• The Open Data Charter (ODC)
• FAIR Principles
14
Are COVID-19 Data Open in Canada? (Hunter & Lauriault)

• Amanda Hunter Proposed MA Thesis
Research Question:
• “How do the ideals of data, information
and knowledge sovereignty and
governance, compare with those of open
science and is an Indigenous open science
possible?”
• Scoping work on Openness and data
sovereignty with FNIGC. (Frank, Dane,
Hunter, Abbot & Lauriault)
15
Open science and Open Data, Reconciliation and Sovereignty

Framework Data
• Framework data (Lauriault)
• are a “set of continuous and fully integrated geospatial [or
topical] data that provide context and reference information for
the country. Framework data are expected to be widely used and
generally applicable, either underpinning or enabling geospatial
applications” P.7.
16

References
• @Rede4BlackLives Protocol https://rede4blacklives.com/the-protocol/
• Agency and Citizenship in a Technological Society http://www.sfu.ca/~andrewf/copen5-1.pdf
• Canadian Geospatial Data Infrastructure Framework Data http://ftp.geogratis.gc.ca/pub/nrcan_rncan/publications/ess_sst/288/288855/cgdi_ip_09_e.pdf
• CanCOVID Speaker Series: Integrating age, sex, gender, race and other factors into COVID research https://www.youtube.com/watch?v=HbZ3IAWTJAg&pbjreload=10
• Critical Race Theory, Race Equity, and Public Health: Toward Antiracism Praxis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2837428/
• Data Feminism https://mitpress.mit.edu/books/data-feminism
• Data Standards for the Identification and Monitoring of Systemic Racism https://www.ontario.ca/document/data-standards-identification-and-monitoring-systemic-racism
• Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics
https://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8/
• First Nation Health Councils http://fnhc.ca/
• First Nations Information Governance OCAP Principles https://fnigc.ca/
• GO-FAIR Starter Kit https://www.go-fair.org/resources/rdm-starter-kit/
• HHI The Signal Code: A Human Rights Approach to Information During Crisis https://hhi.harvard.edu/publications/signal-code-human-rights-approach-information-during-
crisis
• Lam, Andrew, Oct. 2020 COVID-19 Long-Term Care (LTC) Deaths in Canada https://public.tableau.com/profile/andrew.lam3968#!/vizhome/CanadaLTCCOVID-
19Deaths/LTC_Deaths_Canada
• Linton, Megan, Nov. 2020, ‘Warehouses like this are not the answer’: Exposing the crisis of long-term care in Manitoba, Canadian Dimensions,
https://canadiandimension.com/articles/view/warehouses-like-this-not-the-answer-exposing-crisis-long-term-care-manitoba
• Nested Models for Critical Studies of Race & Racism: Creating Measures of Supraindividual Racism https://www.youtube.com/watch?v=04OZ3BFPpVg&feature=youtu.be
• OECD Principles and Guidelines for Access to Research Data from Public Funding https://www.oecd.org/science/inno/open-science.htm
• Open Government Canada https://open.canada.ca/en/about-open-government
• Research Data Alliance (RDA) The final version of the RDA COVID-19 Recommendations and Guidelines for Data Sharing, published 30 June 2020 https://www.rd-
alliance.org/group/rda-covid19-rda-covid19-omics-rda-covid19-epidemiology-rda-covid19-clinical-rda-covid19-1
• Roadmap to Open Science https://www.ic.gc.ca/eic/site/063.nsf/eng/h_97992.html
• Toward a Critical Data Studies http://mural.maynoothuniversity.ie/5683/1/KitchinLauriault_CriticalDataStudies_ProgrammableCity_WorkingPaper2_SSRN-id2474112.pdf
• WHO ICD International Classification of Functioning, Disability and Health (ICF) https://www.who.int/classifications/icf/en/
17

Current Outputs
• October 13, Tracing COVID-19 Data: Analysis of Open Science and Open Data standards for COVID-19 data
in Canada
• September 22, Presentation: Visualizing COVID Data Critically
• July 20, Page Scraping & Data Management Workshop #2 with First Nation Information Governance
Centre and Powered By Data
• July 15, Tracing COVID-19 Data: Open Science Innovation, Open Science Article
• July 14, Tracing COVID-19 Data: Visualizing Intersectionality, Intersectionality Article
• July 7, OLIP Health and Wellbeing Sector Table Meeting Slides http://datalibre.ca/2020/07/03/olip-health-and-wellbeing/
• June 1, Tracing COVID-19 Data: Project Description: http://datalibre.ca/2020/06/01/tracing-covid-19-data-data-and-
technological-citizenship-during-the-covid-19-pandemic/
• May 30, Applications de traçage de contacts: entre doute et inquiétude https://www.lesoleil.com/opinions/point-de-
vue/applications-de-tracage-de-contacts-entre-doute-et-inquietude-ec471da8755aa3efa84afd5da47b025e
• Apr. 17, COVID-19 Demographic Reporting http://datalibre.ca/2020/04/17/covid-19-demographic-reporting/
• Apr. 7, Framework Data by Health Region? http://datalibre.ca/2020/04/07/where-is-the-national-map-of-covid-19-
data-by-public-health-units-in-canada/
• Mar. 31, Data Humanitarianism during a Pandemic http://datalibre.ca/2020/03/31/data-humanitarianism-during-a-
pandemic/
• Mar. 25, COVID-19 Cell Phone Tracking Data – A Health Surveillance Privacy Paradox?
http://datalibre.ca/2020/03/25/covid-19-cell-phone-tracking-data-a-health-surveillance-privacy-paradox/
18

Acknowledgements
Carleton University Rapid Response Research Grant
http://datalibre.ca/tracing-covid-19-data/
Contact
Tracey.lauriault@carleton.ca
Questions?

2. Other Research
20

• 2020 Co-Applicant, Exploration
Competition of the New Frontiers in
Research Fund (NFRF), Imagining
Canada’s Digital Twins with
Carleton University PIs Stephen Fai
Architecture, and Co-Applicants
Tessa Hebb Distinguished Research
Fellow, Alex Ramirez School of
Business and Mario Santana
Architectural Conservation and
Sustainability Engineering
• 2020 Lead researcher, Open North
Open Smart City Policy Briefs,
Internet of Things and Smart Home
abuse with MA Student Olivia Faria,
and Shared Transportation in Open
Smart Cities with MA Students
Donato Leone and Julie Ivanoff.
• 2019 Lead Researcher, Community
Equity Data Analysis, Ottawa Local
Immigration Partnership Community
Grant
Completed
• Co-Principal Investigator, NOI New Frontiers in Research
Fund - Exploration 2019, Imagining Canada's Digital
Twin, PI Stephen Fai, Carleton University.
• 2019 Co-Applicant, Study on Shared Mobility Policy in
Canada, Transportation Canada, PI Stephen Fai,
Architecture, Carleton University.
• 2018 – 2019 Co-Applicant, SSHRC Partnership Engage
Grant, Canadian Smart Cities: An Inventory of Action, PI
Pamela Robinson, School of Regional and Urban
Planning, Ryerson University
• 2016 – 2019 Core Project Team Collaborator, Natural
Resources Canada GeoConnections Grant, Open Smart
Cities, with Open North, and scholars from computers
science and law at the Universities of Toronto and
Ottawa, and partners from the cities of Edmonton,
Guelph, Ottawa and Montreal as well the provinces of
Ontario
• 2018 – 2019 Co-Applicant, SSHRC Partnership Grant
LOI, GeoThink 2.0
• 2016 – 2018 Collaborator, SSHRC Collaborator Insight
Development Grant, Making Data Matter: analyzing the
material effects of big data use in the agrifood sector, PI
Kelly Bronson, Sociological and Anthropological Studies,
University of Ottawa
• 2016 – 2017 Co-Applicant SSHRC Connection Grant,
Data Power 2017 Conference, with scholars from the
universities of Carleton, Ryerson Sheffield and Leeds, PI
Merlyna Lim, Communication and Media Studies,
Carleton
21
Ongoing Research – Tracey P. Lauriault (https://orcid.org/0000-0003-1847-2738)
• 2020 Co-Applicant, Architecture,
Multidisciplinary Research Catalyst
Fund (MRCF): Urban Futures:
intra/inter, Carleton University. PI,
Stephen Fai, Architecture, Carleton
University
• 2018 – 2024 Co-Applicant, SSHRC
Insight Grant, Strategies for
Enhancing the Financial Sustainability
of Canada's Charities PI Susan
Philipps, School of Public Policy and
Administration, Carleton University
• 2018 – 2022 Co-Applicant, SSHRC
Partnership Development Grant,
Mobility Control in the Digital Age:
The Everyday Securing of Human,
Financial and Data Mobilities, PI David
Grondin, Communication, Université
de Montréal
• 2015Faculty of Public Affairs New
Faculty Starter Grant, Carleton
University

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