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Observations:

The information on this page was collected and verified on October 9, 2020.  The information here was collected for research purposes and is related to the following blog post co-authored by Amanda Hunter and Tracey P. Lauriault.

  1. All provincial and territorial, as well as the federal governments are publicly publishing up to date COVID-19 data.
  2. None of official public provincial and territorial, as well as the federal governments health sites publish COVID-19 data under an open data licence. Each claims copyright with the exception of Nunavut that has no statements.
  3. ONLY Saskatchewan, Manitoba*, Nunavut and the North West Territories DO NOT HAVE open government and open data initiatives.  Manitoba has an open government initiative but not with an open data licence.
  4. ONLY British Columbia and Ontario, as well as the Federal Government include COVID-19 data in their open Data Portals / Catalogues. Quebec republishes 4 COVID-19 related datasets submitted by the cities of Montreal and Sherbrooke.

The following includes a list of official COVID-19 provincial and territorial, and federal websites including links to their data and information copyright, terms of use and disclaimers. Also, included are links to open government and open data initiatives, including policies, directives, and open data licences. Finally, each of the existing open data sites were searched on Oct. 9 to assess if they disseminate COVID-19 data.

British Columbia

BC Centre for Disease Control BC COVID-19 Data http://www.bccdc.ca/health-info/diseases-conditions/covid-19/data

© Province of British Columbia

Terms of Use http://www.bccdc.ca/Health-Info-Site/Documents/BC_COVID-19_Disclaimer_Data_Notes.pdf

Disclaimer / Information http://www.bccdc.ca/Health-Info-Site/Documents/BC_COVID-19_Disclaimer_Data_Notes.pdf

Open Information and Open Data Policy https://www2.gov.bc.ca/assets/gov/british-columbians-our-governments/services-policies-for-government/information-management-technology/information-privacy/resources/policies-guidelines/open-information-open-data-policy.pdf

“While the Open Information and Data Policy applies to all government information and Data, legal, policy, and contractual obligations, limit the application of this Policy in some cases. In addition, this Policy sets out specific criteria that must be met before government information is designated for Proactive Disclosure or Routine Release, or before Data can be considered Open Data.”

Open Data https://www2.gov.bc.ca/gov/content/data/open-data

Open Data Licence https://www2.gov.bc.ca/gov/content/data/open-data/open-government-licence-bc

YES – COVID-19 Data in the Open Data Portal

Yukon

COVID-19 information https://yukon.ca/en/covid-19-information

© Copyright 2020 Government of Yukon

Copyright https://yukon.ca/en/copyright

Disclaimer https://yukon.ca/en/disclaimer

Mandate Letter Commitment to Open Data https://yukon.ca/sites/yukon.ca/files/eco/eco-mandate-richard-mostyn_en.pdf

Open Data https://open.yukon.ca/data/

Open Government Licence https://open.yukon.ca/data/open-government-licence-yukon

NO – COVID-19 Data in the Open Data Portal

Alberta

COVID-19 info for Albertans https://www.alberta.ca/covid-19-alberta-data.aspx

© 2020 Government of Alberta

Terms of Use https://www.alberta.ca/disclaimer.aspx#toc-0

Disclaimer and Copyright https://www.alberta.ca/disclaimer.aspx#toc-0

Government of Alberta Open Information and Open Data Policy https://open.alberta.ca/policy

“provides a framework to establish the operational responsibilities, organization, processes, tools and other resources required for a single approach to the open data and open information programs. The policy also provides foundational assurance and guidance to staff from across the Government of Alberta with respect to identifying, preparing, and publishing data and information through the open data and open information portals on a routine basis going forward.”

Open Government Alberta https://www.alberta.ca/open-government-program.aspx

Open Data https://open.alberta.ca/opendata

Open Government Licence https://open.alberta.ca/licence

NO – COVID-19 Data in the Open Data Portal

Northwest Territories

GNWT’s Response to COVID-19 https://www.gov.nt.ca/covid-19/

Copyright https://www.gov.nt.ca/en/terms#2-copyright-and-trademarks

Disclaimer https://www.gov.nt.ca/en/terms

Open Government Policy https://www.eia.gov.nt.ca/sites/eia/files/2018-01-08_open_government_policy_-_signed.pdf

There is a Discovery Portal with environmental geospatial data, but not released under an open data licence; the Copyright Act applies.

Saskatchewan

Saskatchewan Health and Wellness Dashboard https://dashboard.saskatchewan.ca/health-wellness

© 2019, Government of Saskatchewan.

Terms of Use (disclaimer) https://dashboard.saskatchewan.ca/terms

Copyright https://www.saskatchewan.ca/copyright

N/A – No open government or open data initiative.

There is an open geospatial data portal: https://geohub.saskatchewan.ca/ with a Standard Unrestricted Use Data Licence: https://gisappl.saskatchewan.ca/Html5Ext/Resources/GOS_Standard_Unrestricted_Use_Data_Licence_v2.0.pdf

Manitoba

Manitoba COVID-19 Updates https://www.gov.mb.ca/covid19/updates/index.html

Copyright © 2017, Province of Manitoba

Disclaimer https://www.gov.mb.ca/legal/disclaimer.html

Copyright https://www.gov.mb.ca/legal/copyright.html    

Open Government Portal https://www.gov.mb.ca/openmb/index.html

“provides Manitobans with a place to engage with government to share your ideas, stories and knowledge. It’s also an easy way to find government reports and data.”

No Open Data Licence

NO – COVID-19 Data in OpenMB

Nunavut

Department of Health COVID-19 (Novel Coronavirus) https://www.gov.nu.ca/health/information/covid-19-novel-coronavirus

No copyright or disclaimer notifications

N/A – No Open Data or Open Government Initiative.

Ontario

COVID-19 case data: All Ontario https://covid-19.ontario.ca/data

© Queen’s Printer for Ontario, 2012-2020

Terms of Use https://www.ontario.ca/page/terms-use

Copyright https://www.ontario.ca/page/copyright-information-c-queens-printer-ontario

Open Government https://www.ontario.ca/page/open-government

“We’re creating a more open and transparent government by sharing our data and information, and consulting with the people of Ontario. Learn more about open government and the digital transformation taking place within the Ontario Digital Service.”

Open Data Directive https://www.ontario.ca/page/ontarios-open-data-directive

Adopting the International Open Data Charter https://www.ontario.ca/page/adopting-international-open-data-charter

Open Data Catalogue https://data.ontario.ca/

Open Government Licence https://www.ontario.ca/page/open-government-licence-ontario

YES – COVID data in the Open Data Catalogue

Québec

Institut national de santé publique du Québec Données COVID-19 https://www.inspq.qc.ca/covid-19/donnees

© Gouvernement du Québec, 2020

Dispositions de protections des droits de propriété intellectuelle (Copyright/Droits d’auteur) et Intégrité de l’information (Disclaimer)

http://www.droitauteur.gouv.qc.ca/copyright.php

Gouvernement ouvert https://www.quebec.ca/gouv/politiques-orientations/vitrine-numeriqc/gouvernement-ouvert/

Plan d’action pour l’accessibilité et le partage des données ouvertes des ministères et des organismes publics https://cdn-contenu.quebec.ca/cdn-contenu/gouvernement/SCT/vitrine_numeriQc/gouvernement_ouvert/plan_action_gouvernement_ouvert.pdf?1595962618

« constitue la démarche structurée que nous entreprendrons, parce que nous avons la ferme conviction que les affaires de l’État sont également celles de la population. Ce plan d’action représente également l’occasion d’engager une collaboration avec toute la société afin de valoriser la transparence et l’ouverture ».

Données ouvertes https://www.donneesquebec.ca/fr/

License Creative Commons https://www.donneesquebec.ca/fr/licence/#cc-by

NO – Provincial COVID-19 Data in the Open Data Portal only 4 related data republished from the Cities of Montreal and Sherbrooke

Newfoundland and Labrador

Newfoundland and Labrador COVID-19 Pandemic Update Data Hub https://covid-19-newfoundland-and-labrador-gnl.hub.arcgis.com/

Copyright, Government of Newfoundland and Labrador, all rights reserved

Disclaimer/Copyright/Privacy Statement https://www.gov.nl.ca/disclaimer/

Open Government Framework https://open.gov.nl.ca/pdf/OpenGovernmentInitiativeFramework.pdf

Open Government https://open.gov.nl.ca/

“is guided by the principles of transparency, accountability, participation and collaboration. Open governments recognize that true democracy involves working with citizens and stakeholders, not just for them. Open governments acknowledge and benefit from the input, knowledge and expertise that citizens can contribute to the operations and decision-making of government.”

Open Data https://opendata.gov.nl.ca/

Open Data Licence https://opendata.gov.nl.ca/public/opendata/page/?page-id=licence

NO – COVID-19 Data in the Open Data Portal

Newfoundland and Labrador do publish some COVID-19 open datasets on their open geospatial portal with an open data licence.

New Brunswick

New Brunswick COVID-19 Dashboard https://experience.arcgis.com/experience/8eeb9a2052d641c996dba5de8f25a8aa

All content © Government of New Brunswick. All rights reserved.

Copyright and Disclaimer https://www2.gnb.ca/content/gnb/en/departments/jag/attorney-general/content/acts_regulations/content/disclaimer_and_copyright.html

Disclaimer https://www2.gnb.ca/content/gnb/en/corporate/promo/covid-19/about_dashboard.html#disclaimer

Open Data Policy???

Digital Strategy https://www2.gnb.ca/content/dam/gnb/Departments/eco-bce/Promo/digitalnb/digital_new_brunswick.pdf

Open Data New Brunswick https://gnb.socrata.com/

Open Government Licence http://www.snb.ca/e/2000/data-E.html

NO – COVID-19 Data in the Open Data Portal

Prince Edward Island

PEI COVID-19 Case Data https://www.princeedwardisland.ca/en/information/health-and-wellness/pei-covid-19-case-data

© 2020 Government of Prince Edward Island

Website Disclaimer and Copyright Policy https://www.princeedwardisland.ca/en/information/executive-council-office/website-disclaimer-and-copyright-policy

Open Data Principles https://www.princeedwardisland.ca/en/information/finance/open-data-principles

Open Data https://www.princeedwardisland.ca/en/service/open-data

Open Government Licence https://www.princeedwardisland.ca/en/information/finance/open-government-licence-prince-edward-island

NO – COVID-19 Data in the Open Data Portal

Nova Scotia

Coronavirus (COVID-19): case data https://novascotia.ca/coronavirus/data/

Crown copyright © Government of Nova Scotia

Copyright https://beta.novascotia.ca/copyright

Terms https://beta.novascotia.ca/terms

Open Data https://data.novascotia.ca/

Open Government Licence https://novascotia.ca/opendata/licence.asp

NO – COVID-19 Data in the Open Data Portal

Health Canada

Coronavirus disease (COVID-19): Outbreak update https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection.html

Information posted by the Government of Canada is subject to the Copyright Act https://laws-lois.justice.gc.ca/eng/acts/C-42/index.html

Also a link to https://open.canada.ca/en (open.canada.ca/coronavirus)

Government of Canada Open Government https://open.canada.ca/en

“Open Government is about making government more accessible to everyone. Participate in conversations, find data and digital records, and learn about open government.”

Policy on Service and Digital: https://www.tbs-sct.gc.ca/pol/doc-eng.aspx?id=32603 (4.3.2.8 and 4.3.2.8 on Open Information and Open Data)

Directive on Open Government https://www.tbs-sct.gc.ca/pol/doc-eng.aspx?id=28108

Open Data https://open.canada.ca/en/open-data

Open Government Licence https://open.canada.ca/en/open-government-licence-canada

YES – COVID-19 Data in the Open Data Portal

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Article written by: Amanda Hunter & Tracey P. Lauriault

The Organisation for Economic Co-operation and Development (OECD) recently published a policy response to COVID-19 in which they suggest that open science, and the policies & standards that support it, can accelerate the health, social, and economic responses to the virus as barriers to information access are eliminated.

As the first in a series of blog posts about Open Science (OS) and FAIR principles in Canada, here we highlight the key role open science plays in communicating and disseminating official COVID-19 research and public health data before assessing if official COVID-19 reporting in Canada adheres to OS principles.

In a next post, we will analyze official COVID-19 reporting in Canada to assess whether or not these follow Open Science, FAIR principles, and the Open Data Charter in the sharing of COVID-19 data.

What is Open Science?

The OECD Open Science program states that the benefits of open science is that it promotes a more accurate verification of scientific results, reduces duplication, increases productivity, and promotes trust in science.

https://www.oecd.org/science/inno/open-science.htm

Open science (OS) is a movement, a practice and a policy toward transparent, accessible, reliable, trusted and reproducible science. This is achieved by sharing how research and data collection are done so as to make research results accessible and standardized, created once and reused by many. This includes techniques, tools, technologies, and platforms should also be open source wherever possible.

In OS the outputs of the scientific process are considered to be a public good, thus wherever possible articles are published in open access (OA) journals, and research data are shared with the public and other scientists who may want to re-purpose those data in new work, or by people who want to verify the veracity of research results. Reporting COVID-19 Cases by normalizing an open by default approaches means that health scientists, population health experts and government officials make this part of their workflow (maintaining individual privacy of course), and by doing so decision makers beyond government, can scrutinize the results, leading to trust the results while also increasing data sharing.

What role does open science play in combating COVID-19?

In the early stages of the pandemic, knowing the genome provided crucial information to help scientists and researchers identify the origin of the outbreak, treat the infection, develop a diagnostic test and work on the vaccine. In other words, the easier—and quicker—researchers can produce, share and access scientific data, the quicker and the more informed is the collaborative response to the virus.

During the 2002-03 SARS outbreak it took five months to publish a full genome of the virus largely due to information blackouts and lack of data sharing. In contrast, the full genome of COVID-19 was published to an open-access platform nearly a month after the first patient was admitted to the hospital in Wuhan. This provided researchers around the world with a head start. Since OS policies have been operationalized during the pandemic, the resulting free flow of ideas in terms of biomedical research has accelerated (OECD).

The implementation of OS standards during COVID-19 has indeed been largely successful. OECD described how collaborative research and  thee global sharing of information reached unprecedented levels, for example:

  • In March 2020, 12 countries (including Canada) launched the Public Health Emergency COVID-19 Initiative at the level of Chief Science advisors, calling for open access to publications and machine-readable access to data related to COVID-19.
  • Open online platform Vivli offers an easy way to request anonymized data from clinical trials.
  • A COVID-19 Open Research Dataset [CORD-19] was developed that hosts 157,000 + scholarly articles about COVID-19 and related coronaviruses; 75,000 of which are full-text machine-readable data that can be used for AI and natural language processing.

These online, open-source platforms have supported rapid scientific COVID-19 research. OS, facilitated by standards, shared infrastructure and techniques, policies and licences, has been instrumental in the global fight against the pandemic.

Yet, despite the numerous successes, many challenges remain. For example, not all COVID-19 related health research and data adhere to the FAIR principles. FAIR principles are a standards approach which support the application of open science by making data Findable, Accessible, Interoperable, and Reusable. Failure to adhere to FAIR principles has led to an overall lack of communication and coordination during the pandemic. In Canada, data should also adhere to CARE principles, which address issues of Indigenous data governance with respect to Indigenous knowledge along with the OCAP Principles of the First Nation Information Governance Centre (FNIGC). More on this in the following section.

The reporting COVID-19 demographic data and reports in Canada to date falls short on standardized classifications in terms of demographics, as we discussed in an earlier blog post, which makes doing a comparative analysis difficult or impossible: for example, many countries define “recoveries” differently, and in Canada, since health is the jurisdictional responsibility of the provinces and territories, each report in their own way. Even though numerous official organizations publish COVID-19 and health related data, as open data databases or in open data portals, there remains an overall lack of interoperability, comparability and standards.

Where does Canada stand on Open Science?

Canada was implementing an open science framework before the pandemic as follows.

National Action Plan on Open Government

The Government of Canada recently published Canada’s 2018-2020 National Action Plan on Open Government, listing ten commitments to furthering the open government initiative. The plan asserts five commitments to implementing OS in Canada by the end of 2020, as seen below:

A screenshot showing a portion of Canada's 2018-2020 National Action Plan on  Open Government. The main issue addressed here is the difficulty for Canadians to access scientific research outputs: thus the commitments focus on making federal science, scientific data, and scientists themselves more accessible.

The OS portion of Canada’s 2018-2020 National Action Plan on Open Government. It aims to address the difficulty for Canadians to access scientific research: thus the commitments on making federal science, scientific data, and scientists themselves more accessible (Government of Canada, 2018).

The Action Plan addresses issues of accessibility and transparency of scientific research and outlines 5 commitments to amending these issues. These commitments include:

  1. Development of an OS roadmap,
  2. Providing an open access platform for publications,
  3. Raising awareness of federal scientists’ work,
  4. Promoting OS and soliciting feedback on stakeholder needs, and
  5. Measuring progress & benefits of the OS implementation.

Despite the comprehensiveness of the Roadmap (see below), Canada has not yet moved past the Action Plan’s second commitment—to provide a platform for Canadians to find and access open access (OA) publications from federal scientists—despite the projected March 2020 deadline. Also, at the time of writing, there is no federal open science platform or portal for users to access open science data in Canada even though there is an open data portal. The New Digital Research Infrastructure Organization (NDRIO) does show promise.

There are however some open data initiatives, such as the Federal Open Government and COVID-19 section on the Open Government Canada Portal.  Here Epidemiological and economic research data, with mathematical modeling reports, a map of cases and deaths by province, daily and weekly detailed epidemiological reports, and an ongoing dataset of COVID-19 cases, deaths, recoveries, and testing rates in Canada’s provinces and territories are made available. This is a significant improvement from the early days of reporting, as data journalist Kenyon Wallace discovered that on a daily basis, the Province of Ontario published new data but each time they did they overrode the previous day’s reports. His article and some work by Lauriault with the Ontario Open Government team resulted in changing that practice and raw data are now updated daily and reported. Open data is but one part of the OS process as we will see when we look at the FAIR principles.

Open Science Roadmap

The plan’s first commitment, to “develop a Canada Open Science Roadmap…” was completed and published in February 2020. The document provides ten recommendations made by Chief Science Advisor, Dr. Mona Nemer, to advance Canada’s OS initiatives. Like the policy brief by OECD, the roadmap is driven by the importance of trust among collaborators, inclusiveness of varying perspectives, and transparent processes throughout.

A screenshot of the cover of Canada’s Roadmap for Open Science (Government of Canada, 2020)

Canada’s Roadmap for Open Science (Government of Canada, 2020)

Most importantly, the Roadmap describes a commitment to developing an OS framework, including adopting the FAIR principles and “open by design and by default” specifications. The roadmap asserts Canada’s commitment to upholding these standards and policies via 10 recommendations:

10 recommendations made in the Roadmap for Open Science. Key points include the adoption of an OS framework in Canada, making federal scientific research outputs ‘open by default’, and implementing FAIR principles. (Government of Canada, 2020).

10 recommendations in the Roadmap for Open Science. Key points include the adoption of an OS framework, making federal scientific research outputs ‘open by default’, and implementing FAIR principles (Government of Canada, 2020).

Model Science Integrity Policy

Canada also has a Model Science Integrity Policy (MSIP) for the public service. The MSIP represents an internal commitment to integrity and accountability in science. Various mandates in the MSIP state that their purpose is to increase public trust in the credibility and reliability of government research and scientific activities, and ensure that research and scientific information are made available in keeping with the Government of Canada’s Directive on Open Government. The MSIP echoes Canada’s commitment to OS.

Indigenous Data Governance 

Finally, Canada has some commitment to supporting Indigenous rights to self-determination and data governance, but does not incorporate standards such as CARE principles which support OS  nor the OCAP Principles when it comes to Indigenous data governance. These extend the FAIR principles.

The Global Indigenous Data Alliance (GIDA) introduced the CARE principles to complement the FAIR principles in 2019. The CARE principles for Indigenous data governance were developed to address a lack of engagement between the open science movement and Indigenous rights and interests (GIDA, 2019).

The FAIR principles focus on data accessibility of data and sharing but fail to address power differences and the impact of colonialism experienced by Indigenous peoples and their right to exercise control and ownership of data about them and local and traditional knowledge. The CARE principles are crucial for the recognition and advancement of these rights as they encourage open science (and other ‘open’ movements) to “consider both people and purpose in their advocacy and pursuits” (GIDA, 2019). The CARE principles are contrasted with the FAIR principles in the below image from the GIDA website:

The CARE principles, which are “collective benefit, authority to control, responsibility, and ethics”, contrasted with the FAIR principles, which are “findable, accessible, interoperable, and reusable” (GIDA, 2019)

The CARE principles are “collective benefit, authority to control, responsibility, and ethics”, contrasted with the FAIR principles, which are “findable, accessible, interoperable, and reusable” (GIDA, 2019)

The OCAP Principles of Ownership, Control, Access and Possession are another set of important principles, that are a better fit in the Canadian Context.  Members of our project currently taking the Fundamentals of OCAP course and we hope to better incorporate these approaches in our work and in how we assess official reporting. Though Indigenous data governance and handling of Indigenous knowledge are not addressed in the Open Science Roadmap, the Data Strategy Roadmap for the Federal Public Service does demonstrate a federal approach to supporting Indigenous data strategies (see below):

Recommendation #8 from the Data Strategy Roadmap for the Federal Public Service which states Canada’s recognition of the Indigenous right to self-determination and data governance (Government of Canada, 2019)

Recommendation #8 from the Data Strategy Roadmap for the Federal Public Service which states Canada’s recognition of the Indigenous right to self-determination and data governance (Government of Canada, 2019)

Next Steps

Much progress has been made in terms of publishing, reporting and communicating data in the short time since COVID-19 began (though not without pressure from the media!). Open access to scientific research and public health reports have been helpful to facilitate the rapid response to the virus and keeping the public informed on how science informs governments actions. There is, however, much left to be done.

  1. Open Science should consider bias in data as well as invisibilities for example interdisciplinary work that helps paint the fuller picture of the impact of the virus. For example, interdisciplinary and intersectional approaches to data categories, including research based in critical race theory (CRT), Indigenous perspectives, socio-demographics and gig labour groups for example.
  2. Second, as suggested by the OECD, making COVID-19 data Findable, Accessible, Interoperable and Reusable is critical for a more effective rapid response. Lack of adherence to FAIR principles currently presents challenges to open science research.
  3. Finally, a meaningful Canadian OS framework should also incorporate standards for Indigenous Data Governance such as CARE Principles and OCAP Principles ensure respectful data practices are followed.

The Tracing COVID-19 Data team is in the process of developing a framework to assess official COVID-19 reporting in Canada to see if they comply with OS, FAIR, CARE, OCAP, and open-by-default at all levels of government. We will draw on Canada’s commitments OS and FAIR in – Canada’s 2018-2020 National Action Plan on Open Government, Open Science Roadmap, the Model Science Integrity Policy and the Open Data Charter.

Is Canada FAIR?

Stay tuned!

Recommendation

All official Federal, Provincial/Territorial and City public COVID-19 data reporting should be open data, open by design and by default, research should be published in open access (OA) Journals and should adhere to open science (OS) such as the FAIR principles , CARE Principles, OCAP Principles and the Open Data Charter.

References

Canadian Internet Policy and Public Interest Clinic. Open Data, Open Citizens? https://cippic.ca/en/open_governance/open_data_and_privacy

Centres for Disease Control and Prevention. (n.d.). SARS- Associated Coronavirus (SARS-CoV) Sequencing. https://www.cdc.gov/sars/lab/sequence.html

CTVNews. (2020). Project Pandemic: Reporting on COVID-19 in Canada. 
https://www.ctvnews.ca/health/coronavirus/project-pandemic

Federated Research Data Repository. (2018). FAIR Principles. 
https://www.frdr-dfdr.ca/docs/en/fair_principles/

Global Indigenous Data Alliance. (2019). CARE Principles for Indigenous Data Governance. 
https://www.gida-global.org/care

Government of Canada. (2014). Directive on open government. 
https://www.tbs-sct.gc.ca/pol/doc-eng.aspx?id=28108

Government of Canada. (May, 2016). Open by default and modern, easy to use formats. 
https://open.canada.ca/en/content/open-default-and-modern-easy-use-formats

Government of Canada. (2017). Model policy on scientific integrity.
https://www.ic.gc.ca/eic/site/063.nsf/eng/h_97643.html

Government of Canada. (2018). Canada’s 2018-2020 National Action Plan on Open Government. https://open.canada.ca/en/content/canadas-2018-2020-national-action-plan-open-government#toc8

Government of Canada. (2018). Report to the Clerk of the Privy Council: A Data Strategy Roadmap for the Federal Public Service. https://www.canada.ca/content/dam/pco-bcp/documents/clk/Data_Strategy_Roadmap_ENG.pdf

Government of Canada. (2020). Coronavirus disease (COVID-19): Outbreak update.
https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html?utm_campaign=not-applicable&utm_medium=vanity-url&utm_source=canada-ca_coronavirus

Government of Canada. (2020). Office of the Chief Science Advisorhttps://www.ic.gc.ca/eic/site/063.nsf/eng/h_97646.html

Government of Canada. (2020). Open Government Portal.
https://open.canada.ca/data/en/dataset

Lauriault, T. (2020, April 17). Tracing COVID-19 Data: COVID-19 Demographic Reporting. Datalibre.
http://datalibre.ca/2020/04/17/covid-19-demographic-reporting/

National Centre for Biotechnology Information. (2020). Public Health Emergency COVID-19 Initiative.
https://www.ncbi.nlm.nih.gov/pmc/about/covid-19/?cmp=1

Open Data Charter. (n.d.). The International Open Data Charter.
https://opendatacharter.net

Organisation for Economic Co-operation and Development. (2020, May 12). OECD Policy Responses to Coronavirus (COVID-19): Why open science is critical to combatting COVID-19.
http://www.oecd.org/coronavirus/policy-responses/why-open-science-is-critical-to-combatting-covid-19-cd6ab2f9/

Ford & Airhihenbuwa. (2010). The public health critical race methodology: Praxis for antiracism research. Science Direct.
https://www.sciencedirect.com/science/article/abs/pii/S0277953610005800#!

Semantic Scholar. (2020). CORD-19: COVID-19 Open Research Dataset.
shorturl.at/wETZ5 

The Lancet. (January, 2020). Genomic characterization and epidemiology of 2019 novel coronavirus: implications for virus origins and receptor binding.
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30251-8/fulltext

The National Academies of Science, Engineering, Medicine. (2018). Open Science by Design: Realizing a Vision for 21st Century Research. Chapter 1, Front Matter. 
https://www.nap.edu/read/25116/chapter/1

The Star. (2020). Coronavirus & COVID-19 Data. https://www.thestar.com/coronavirus/data.html

Vivli. (2020).
https://vivli.org/about/overview-2/

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I was just awarded a small but not insignificant award as part of the Carleton University COVID-19 Rapid Response Research Grants. Below is a description of what I will be up to, along with some great students and expert advisors.  I will share everyone’s names later.  Results of the work will be published here as it becomes available!  Stay tuned. Also, let me know if you want to contribute in any way! Tracey dot Lauriault at Carleton dot CA

Research Summary

There is much official COVID-19 data reporting by federal, provincial, territorial and Indigenous Communities. As the pandemic evolves, and more information comes to light, there is a call to add data attributes about Indigenous, Black and Racialized groups and of the affected labour force, and to report where cases predominate. The pandemic also revealed that foundational datasets are missing, such as a national list of elder care homes, maps of local health regions and data about the digital divide. This project will embrace technological citizenship, adopt a critical data studies theoretical framework and a data humanitarian approach to rapidly assess data shortfalls, identify standards, and support the building of infrastructure. This involves training students, conducting rapid response research, developing a network of experts, learning by doing and a transdisciplinary team of peer reviewers to assess results. The knowledge will be mobilized in open access blog posts, infographics, policy briefs and scholarly publications.

Research challenge:

Official COVID-19 public heath reports by Federal, Provincial, and Territorial (F/P/T) and First Nation Communities are uneven and there are calls to improve them ( 1 CBC News, Toronto Star). Asymmetries can be attributed to dynamically evolving challenges associated with the pandemic, such as working while practicing social distancing; jurisdictional divisions of power in terms of health delivery; and responding to a humanitarian crisis, where resources are stretched and infrastructures are splintered (i.e. digital divide, nursing home conditions).

The Harvard Humanitarian Initiative (HHI) developed a rights-based approach to the management of data and technologies during crisis situations which includes the right to: be informed, protection, privacy and security, data agency and rectification and redress (2). These apply to contact tracing (3 ITWorld, Scassa) and to equity groups calling for demographic data (1). Other have conducted rapid response data reporting, for example after the Haiti Earthquake volunteers developed real-time crowdsourcing data collection systems to support humanitarian responders (4 Meier) and WeRobotics mobilizes local drone expertise to objectively assess proposed pandemic response technologies (5 WeRobotics).

This research will apply a critical data studies (CDS) theoretical framework (6 Kitchin & Lauriault), the principles of the HHI and, practice technological citizenship (7 Feenbert) to the study of the Canadian COVID-19 data response. Lauriault will leverage her expertise and Canadian and international network of open data, open government, civic technology experts in government, civil society, and Indigenous Communities (see CV) as seen in the policy briefs published on DataLibre.ca (8) to rapidly assess and support COVID-19 data management and reporting.

The objective is to carry out the following activities:

  1. Compare official COVID-19 public health data reports to identify gaps and best practices (9 Lauriault & Shields).
  2. Identify and support the building of framework datasets to standardize reporting (10 Lauriault).
  3. Analyze data standards and protocols to support data management, interoperability and cross-jurisdictional reporting (11 GeoConnections).
  4. Publish case-studies, resources, an archives of official reporting, and a glossary and
  5. Rapidly conduct expert analysis, peer review, knowledge mobilization and provide evidence-based recommendations to improve data reporting.

The rationale for this research is as follows:

  1. Official COVID-19 public health data are inconsistently reported, impeding comparability, and the ability to assess impact and target actions. Also, predictions missed seniors’ homes, precarious labour, and Indigenous communities and social determinants (12 Global News, NCCDH), resulting in an increase in cases and deaths. Currently job classifications and Indigenous, Black, and Racialized people classifications (13 CTV News) remain absent. This research will create a corpus of F/P/T and Indigenous Communities’ official reports, compare results, identify gaps.
  2. Framework data are standard information infrastructures upon which other analysis can consistently be done (14 Toronto Star). When this is lacking analysis is impeded, for example there is no national reporting by health region since no national framework dataset exists (15 Lauriault), and mitigating the digital divide is thwarted with a lack of broadband maps (16 Potter & Lauriault et al.). Other missing national datasets include senior care facilities, homeless shelters, precarious labour, and Indigenous Communities (17 Gaetz et al.). Needed framework datasets will be identified and if necessary coordinate their building (18 SPCOStatCan LODE), advocacy for the opening of public datasets such as corporate registries may be carried out (19 Fed. Registry,  Open Corporate, Open Contracting), and experts from public health , social planning, and Indigenous Communities will help identify localized frameworks.
  3. Consistent COVID-19 reporting requires an interoperable infrastructure which builds upon standards developed through consensus processes (20 CIHI, PHAC). Current uneven reporting may be attributed to a lack of standards adoption and formalization in terms of data flows. This research will develop a repository of standards and protocols and share these with decision-makers to improve interoperability (i.e. Data Standards for the Identification and Monitoring of Systemic Racism (21 ON Govt) and FNIGC OCAP Principles (22 FNIGC)).
  4. Rapidly mobilizing knowledge is important to improve reporting and manage data, and to build a crisis data reporting infrastructure for the future. This project will compile, and archive information, rapidly assess and peer review results with experts and report results on DataLibre.ca and other websites, will produce infographics and policy briefs, deliver online webinars, and help administrators and Indigenous Communities improve their data and technology policies.

A CDS framework recognizes that data have social and material shaping qualities and that they are never politically neutral while also being inseparable from the people and institutions who create them including practices, techniques, and infrastructures. This involves a team of data, technology, legal, social and health, and Indigenous experts to rapidly assess official COVID-19 data assemblages and to act as technological citizens by applying knowledge in real time and mobilize results to mitigate the data shortfalls witnessed during this crisis and support decision makers to respond with a data humanitarian and rights-based approach for now and to better respond in the future.

Expected Impact:

The target audience for this rapid response data and technology reporting is F/P/T public officials and Indigenous Community Leaders who manage public health, socio-economic, statistical and official record data flows; and civil society actors and the public involved in open data, open government and open contracting, transparency and accountability. This includes C-class executives, chief technology, information data, and digital officers.

The outcome of this research is to standardize and improve humanitarian crisis data management and data reporting in the short term to ensure consistent reporting, and in the long term establish standardized data workflows and operationalize data infrastructures for this pandemic in preparation for the next.

The timing to compile, inventory and build an open access archives of official data reporting is now as the fractures in the system have become apparent in real-time and have had negative consequences. It is important to monitor the response as it evolves so as to be able to improve it while our collective institutional memory is fresh and to have the evidence available as a reminder for if and when we forget, but also to build more robust systems.

The results of this research will be continuously reported and made openly accessible as it becomes available and will lead to the formation of a new research team.

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TracingCOVIDbanners-08It is very odd that national health organizations are not reporting COVID-19 cases aggregated into health regions even though provinces and territories are mostly reporting them in that way. And where is the national health framework datasets?

Framework data are a “set of continuous and fully integrated geospatial 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.

Federal Electoral Districts for example, are the official framework data for Elections Canada and these data are updated for each election.  They are used to administer elections, report the results of exit polls during the elections, and show the results after an election.  Framework data are available in multiple formats as well as in cartographic or mapping products for Geographic Information Systems (GIS) such as ESRI, MapInfo or Tableau (Shapefiles), in KML formats for GoogleMaps, and in standardized online mapping GML Formats which also happens to also be a Treasury Board Secretariat of Standard for Geospatial Data. Election result data are aggregated into these framework data along with other socio-economic data, and once these data are mapped we can compare and can tell a more nuanced local, regional and national story, we can see patterns across the country.  The benefit of framework data are many, what is also great is they are created once by an authoritative source, they are updated and reliable, they are used many times, they are open data and everyone knows where to get them.

Considering that health care spending is one of the largest expenditures we have as a nation state, and it would be expected that in an era of accountability and transparency and where outcomes based management is the norm, it is astonishing that health data including its social determinants data are not disseminated in this way.  Yes, there are privacy issues, but we are capable of addressing those with the Census and Elections, which means we can also do so for health. We need to have an evidence based conversation about population health now more than ever, and we will need these data to tell a socio-economic story as well. Could we have done better? Who is doing great and why and who is not doing so great and why, what can we learn and what is the remedy?

Numerous useful and insightful interactive maps were published after the elections (CBC, CTV, Macleans, ESRI and many others), and these generated much discussion, people could see the results, they could situate themselves, they could see what friends and family in other places were experiencing.  Analysts and policy makers also had what they needed to understand and plan a new context. This is what democratic evidence based data journalism and policy making is all aboutt!

Natural Resources Canada is normally the producer of Canada’s framework data but it does not produce a health region framework dataset for Canada.  Arguably, these data would not only be useful during a pandemic, but also for administering and reporting health associated with natural resources such as allergies in the spring and fall, food insecurity, health and farming, or health after a natural disaster such as flooding and fires.  They data would also be useful to see where money is spent providing Canadians with the evidence they require to advocate for change.

So why no national heath reporting by their administrative boundaries and where is the health region framework dataset?

National Health Reporting Canada:

Virihealth.com and ESRI Canada produced the the first National ge0-COVID-19 reporting:

https://virihealth.com/

https://virihealth.com/

https://resources-covid19canada.hub.arcgis.com/app/eb0ec6ffdb654e71ab3c758726c55b68

https://resources-covid19canada.hub.arcgis.com/app/eb0ec6ffdb654e71ab3c758726c55b68

Federal Government:

Canada as a federation has jurisdictional divisions of power, and one of those jurisdictional  divides is health. We have the Canada Health Care Act (CHA) that

“establishes criteria and conditions related to insured health services and extended health care services that the provinces and territories must fulfill to receive the full federal cash contribution under the Canada Health Transfer (CHT)”.

The Canada Health Transfer (CHT) provides long-term predictable funding for health care, on a per capital basis and

“supports the principles of the Canada Health Act which are: universality; comprehensiveness; portability; accessibility; and, public administration”.

The provinces and territories receive cash transfers to deliver health care to Canadians and health care data reporting is done by the each province and territory separately. This alone justifies the creation of a national health region framework dataset. Which organization should be responsible for it?

There are three main organizations which are part of the Canada Health Portfolio  that currently report official COVID-19 cases. At the moment, they do not publish COVID-19 case data by health regions.

Health Canada “is the Federal department responsible for helping Canadians maintain and improve their health, while respecting individual choices and circumstances.” Health Canada is an official and authoritative national source of COVID-19 data and it publishes the Coronavirus disease (COVID-19): Outbreak update. Reporting includes an interactive map and a line graph of data by Province and Territory.

https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection.html

https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection.html

Public Health Agency of Canada (PHAC) promotes and protects the health of Canadians through leadership, partnership, innovation and action in public health and it does so by: Promoting health; Preventing and controlling chronic diseases and injuries; Preventing and controlling infectious diseases; Preparing for and responding to public health emergencies; Serving as a central point for sharing Canada’s expertise with the rest of the world; Applying international research and development to Canada’s public health programs; and Strengthening intergovernmental collaboration on public health and facilitate national approaches to public health policy and planning. PHAC now disseminates an excellent interactive dashboard entitled the National Epidemiological Summary of COVID-19 Cases in Canada. Their data sources are: Public Health Agency of Canada, Surveillance and Risk Assessment, Epidemiology update; Natural Resources Canada – Grey basemap with Credit: COVID-19 Situational Awareness tiger team Powered by ESRI-Canada and COVID-19 Canadian Geostatistical Platform, a collaboration between Public Health Agency of Canada, Statistics Canada and Natural Resources Canada.

https://phac-aspc.maps.arcgis.com/apps/opsdashboard/index.html#/e968bf79f4694b5ab290205e05cfcda6

https://phac-aspc.maps.arcgis.com/apps/opsdashboard/index.html#/e968bf79f4694b5ab290205e05cfcda6

Canadian Institute for Health Research (CIHR) is the Government of Canada’s health research investment agency and its mandate is to “excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.” Although a research funding organization, CIHR could publish a national framework dataset of health units to help researchers in Canada and to also to disseminate the findings of research either about COVID-19 or any other research according to those administrative boundaries. (Update 07/04/2020 CIHR does not have a framework data file)

A national non-governmental organization, the Canadian Institute for Health Information (CIHI) also disseminates national comparative health data, mostly about the administration of health and it would make sense for them to also publish data by health units and to have such a framework dataset. CIHI is an independent, not-for-profit organization that provides essential information on Canada’s health system and the health of Canadians. (Update 07/04/2020 CIHI does not have a framework data file). CIHI’s mandate is

“to deliver comparable and actionable information to accelerate improvements in health care, health system performance and population health across the continuum of care”.

Natural Resources Canada is the producer of most of Canada’s Framework data, and it could with the help of the Canadian Council on Geomatics Provincial and Territorial Accord could create this framework file and this was discussed at the 4th Annual SDI Summit meetings hosted in Quebec City in the Fall of 2019.

Statistics Canada produces Provincial and Territorial Health Geographies and it does seem to have a national GIS Health Regions: Boundaries and Correspondence with Census Geography file for 2018, and if that is the case, why are health geographies not reported by these boundaries? (Update 07/04/2020 StatCan has a 2018 GIS national health geography file).  Here is a PDF version of the 2018 map.

https://www150.statcan.gc.ca/n1/pub/82-402-x/2018001/maps-cartes/rm-cr14-eng.htm

https://www150.statcan.gc.ca/n1/pub/82-402-x/2018001/maps-cartes/rm-cr14-eng.htm

Provincial and Territorial Official COVID-19 Case Reports and health geographies:

Below I have compiled a list of official COVID-19 Case reporting by province and territory, and when I could find them, I included a link to health administration geographies. That does not mean that data are reported in maps, but data are generally tabulated according to health administration geographies.

Alberta

British Columbia

Manitoba (Updated RHA and Map info. 07/04/2020)

Newfoundland and Labrador (Updated RHA and Map info. 07/04/2020)

New Brunswick (Updated RHA and Map info. 07/04/2020)

North West Territories

Nova Scotia

Nunavut

Ontario

Prince Edward Island (Updated Health PEI info. 07/04/2020)

Quebec (Updated Map info 08/04/2020)

Saskatchewan

Yukon (Updated Health Region info. 07/04/2020)

I have emailed each of the Provincial and Territorial governments to confirm that I have the latest heath geography framework data.  I have received updates from Yukon, Quebec,  PEI, New Brunswick, and Manitoba, and have updated map data accordingly. I have also received correspondence from Statistics Canada, and CIHI.

For the moment ESRI Canada and some of the Provinces and Territories are reporting Official COVID-19 Cases by health region geographies.  Why aren’t Health Canada and the Public Health Agency of Canada doing so?  And where is the National Health Region Framework Data file?

TracingCOVIDbanners-08Across the country adhoc open data groups are meeting, holding hackathons online, they are making all sorts of apps, they are asking for data and want current data channels improved, they are making maps and deploying platforms, but also they are concerned about tracking and surveillance. These groups involve people from all levels of government, civic technology, open data, and the private sector. People are involved for all kinds of reasons and what is notable is that these are people who have agency, knowledge, and power combined with the capacity to act – the key ingredients for what Andrew Feenberg would call, technological citizenship. Doing technological citizenship is one way for people to engage in a technological society such as Canada, and in a very sophisticated and complicated information and technology situation such as a pandemic.

People’s intentions are good, but as the saying goes ‘the road to hell is paved with good intentions’ and caution and level headedness is required.

People involved in humanitarian work know this, and we have much to learn from them, and Patrick Meir is one of these great people. He shares in Digital Humanitarians: How Big Data is Changing the Face of Humanitarian Response what he learned during the 2010 Earthquake disaster in Haiti, and in other contexts. He is not alone, there is much to learn from the Signal Program on Human Security and Technology at the Harvard Humanitarian Initiative (HHI) at the Harvard T.H. Chan School of Public Health, the Responsible Data project and the Protection Information Management (PIM) initiative.

It is time to bring this overseas humanitarian crisis work home!

This is an exceptional time and right now we are witnessing the erosion of basic rights in exchange public good, as the situation is ‘evolving’, while a new form of data politics emerges with little or no discussion of data governance. The changes comes with an increase in surveillance and control, which might stay longer than we had thought and hoped for.

This too is not new, and the Signal Code work was developed precisely for this type of situation. These researchers advocate for a rights based approach for humanitarian information activities (HIA) work during a crisis, a pandemic is arguably a crisis, and they refer to the Humanitarian Charter and Minimum Standards in Humanitarian Response that starts with an understanding of dignity as being:

…more than physical well-being; it demands respect for the whole person, including the values and beliefs of individuals and affected communities, and respect for their human rights, including liberty, freedom of conscience and religious observance.

They also argue for a duty of care to be operationalized during the crisis, and I would argue that this should be done by us and our governors and administrators, so that we do not use this pandemic as reasoning to violate rights, to circumvent the law and to be negligent in our data and technology work. The COVID-19 pandemic is temporary, but the data collected and the technologies built will live beyond the crisis. There therefore a duty to be responsible now and to develop data governance strategies for the future.

The goal of the Signal Code is to develop ethical obligations for humanitarian actors including minimum technical standards for the safe, ethical, and responsible conduct of humanitarian information activities (HIAs) before, during, and after disasters strike. They provide the following five rights when conducting HIAs:

1. The Right to Information

Access to information during crisis, as well as the means to communicate it, is a basic humanitarian need. Thus, all people and populations have a fundamental right to generate, access, acquire, transmit, and benefit from information during crisis. The right to information during crisis exists at every phase of a crisis, regardless of the geographic location, political, cultural, or operational context or its severity

2. The Right to Protection

All people have a right to protection of their life, liberty, and security of person from potential threats and harms resulting directly or indirectly from the use of ICTs or data that may pertain to them. These harms and threats include factors and instances that impact or may impact a person’s safety, social status, and respect for their human rights. Populations affected by crises, in particular armed conflict and other violent situations, are fundamentally vulnerable. HIAs have the potential to cause and magnify unique types of risks and harms that increase the vulnerability of these at-risk populations, especially by the mishandling of sensitive data.

3. The Right to Privacy and Security

All people have a right to have their personal information treated in ways consistent with internationally accepted legal, ethical, and technical standards of individual privacy and data protection. Any exception to data privacy and protection during crises exercised by humanitarian actors must be applied in ways consistent with international human rights and humanitarian law and standards.

4. The Right to Data Agency

Everyone has the right to agency over the collection, use, and disclosure of their personally identifiable information (PII) and aggregate data that includes their personal information, such as demographically identifiable information (DII). Populations have the right to be reasonably informed about information activities during all phases of information acquisition and use.

5. The Right to Rectification and Redress

All people have the right to rectification of demonstrably false, inaccurate, or incompletedata collected about them. As part of this right, individuals and communities have a right to establish the existence of and access to personal data collected about themselves. All people have a right to redress from relevant parties when harm was caused as a result of either data collected about them or the way in which data pertaining to them were collected, processed, or used.

These are important to consider. I will come back to these in the coming days and I will point to insight provided by other who have first hand experience of doing data work during a time of crisis. I hope this is food for thought.

TracingCOVIDbanners-0814 days later!

Both Hugh and I agree, that it is time to use this platform again.

COVID-19 and cell phone data tracking is a Privacy Paradox par excellence! The the concept originally encapsulated how we were willing to trade-off the sharing of one’s data for the use of a ‘free’ social media platform.  We kinda’ knew that our data were being sold off to third parties, and traded by data brokers, and we sorta let it go, so we reacted by setting up some add blockers, adjusting our settings, using VPNs, or changing our browsers to things like DuckDuckGo. As imperfect as that situation was and is, that is what we did and it is what we do.

But cell phone tracking is something quite different.

Helen Nissembaum‘s Contextual Integrity (CI) is a very useful framework to think this through, for her “privacy, defined as CI, is preserved when information flows generated by an action or practice conform to legitimate contextual informational norms; it is violated when they are breached“. There are four CI theses as follows:

  • Thesis 1: Privacy is the Appropriate Flow of Personal Information
  • Thesis 2: Appropriate Flows Conform with Contextual Informational Norms (“Privacy Norms”)
  • Thesis 3: Five Parameters Define Privacy (Contextual Informational) Norms: Subject, Sender, Recipient, Information Type, and Transmission Principle
  • Thesis 4: The Ethical Legitimacy of Privacy Norms is Evaluated in Terms of: A) Interests of Affected Parties, B) Ethical and Political Values, and C) Contextual Functions, Purposes, and Values.

In terms of norms, social media is one thing, we do get upset when we find out that our photos are being used for facial recognition by our law enforcement institutions, when behaviour is tracked for targeted marketing purposes by data brokers or worse when scurrilous actors use our data to disrupt democracy. But our cell phone data, that is another level! We also know about UBER and smart phone provider transgressions but we seem to know very little about the Murkyness of Telecom Surveillance.  Furthermore, we are beginning to realize, that we cannot Privacy By Design (PbD) our way out of this, nor is cybersecurity enough, and that institutional and technological solutionism, falls short! We need to figure out how to govern these data practices right now.

These are exceptional times, circumstances are exceptional, the stakes are high, and the norms they are a changin’ . CI helps frame our thinking, although, Nissembaum also realizes that her thesis may need to reconsider how technology is an actor, while Teresa Scassa in Private Sector Data, Privacy and Pandemics and Michael Geist both warn us about the new normal, they also define and categorize types of data in a pandemic situation to help us out, frame their analysis with issues pertaining to law, policy and governance, and provide ways to circumscribe how these data might be shared to serve the public good or interest at this time.

But, who will govern this, and for long will this ‘sharing’ & tracking go on for?

What is for sure, just like 911 set new benchmarks in terms of what kind of surveillance we wound up ‘living with’,  COVID-19 will change data and technological monitoring norms. This may also be a time where we might change the course what surveillance we will accept, as presumably we are smarter now! There are perils and there are opportunities. How will we govern ourselves and our data during and post the pandemic era!

Below is a smattering of news articles on the topic:

Watching this is a great New Years morning activity, and for Sep Kamvar I fell that data and statistics are the new black!  This is worth the 1 hour of your time!  dam, most online TV shows are 42 minutes and you learn way less…I should know 🙁

Merci Karl!

It looks like a biased toward industry monitoring agency Regional Aquatics Monitoring Program (RAMP) has left the public in the dark about fish abnormalities in waters in and around the oil sands sites.  It is also a case where the monitoring agency is aggregating the data into annual reports and not providing the raw data for others to scrutinize.

“That is the problem. To get the actual data, you need the raw data,” not just annual reports, said Kevin Timoney, an Alberta ecologist and oil sands researcher. “They release just enough so they can say that they did, but they don’t give you enough to see what’s really going on.”

Pembina Institute: “An essential component of any credible monitoring program is that all the data should be available to the public,

Hundreds of deformed fish found in rivers running through the Alberta oil sands have been collected and documented by an industry-led monitoring body, The Globe and Mail has learned, but the findings were not shared with the public or key decision makers in government.

That body, the Regional Aquatics Monitoring Program (RAMP), has been criticized in scientific quarters as secretive and is under the scrutiny of three reviews. Former environment minister Jim Prentice ordered one of those reviews after being shown photos this fall of a few malformed fish, and it was delivered Thursday to Environment Canada.

The Monitoring agencie’s Steering Committee is mixed between Oil industry, public health agencies, First Nations and government with very heavy emphasis on big oil industry:

Alberta Energy Resources Conservation Board (formerly Alberta Energy and Utilities Board Health Canada
Alberta Environment Husky Energy
Alberta Sustainable Resource Development Imperial Oil Resources
Canadian Natural Resources Ltd. MEG Energy Corp.
ConocoPhillips Canada Nexen  Inc.
Devon Canada Corporation Northern Lights Health Region
Environment Canada Regional Municipality of Wood Buffalo
Fort McMurray First Nation Shell Albian Sands
Fisheries and Oceans Canada Suncor Energy Inc.
Fort McKay First Nation Syncrude Canada Ltd.
Hammerstone Corporation Total E&P Canada Ltd.

I tried to find out who the members of the technical committee are but only found the following org chart which illustrates that the 3 non government stakeholders are First Nations or Metis Groups and these are dwarfed between industry and government. On the Government side you also see an Energy and Utilities Board, while on the industry side, by the largest number representatives,  is the petroleum & energy industry:
The following are the labs RAMP states it subs it’s work to.  I do not know enough the science to assess them.  I do wonder if they would have the raw data in their shops and if they would release these to the public.  A lab that is sub-contracted may or may not be the owners of the data and may or may not have given up the rights to publish them.  This is often the issue with the procurement of data, for instance, survey engineers claim IP on their data and share them with a city only for city assessments, but the city has to send citizens back to the survey engineer to view those data and the city cannot share these with citizens openly.  In this case, it would be more trustworthy to acquire the raw data from the labs directly.  However, it also depends who owns these labs.  They could very well be owned by the industries that need tests done, or they could be biased toward those industries as they would be their major source of revenue.

  • ALS Environmental – most water and sediment quality analyses
  • Alberta Research Council – some ultratrace metal analyses
  • AXYS Laboratories – sediment concentrations of PAHs
  • HydroQual – water and sediment toxicity analyses
  • Flett Research – mercury analysis in non-lethal fish tissue samples
  • Jack Zloty – benthic invertebrate taxonomy

RAMP shares its information only in annual monitoring reports.  There is an interactive web map of their monitoring sites.  The legend indicates fish tissue monitoring site, and I only found 2 fish tissue sampling sites that do not provide much data except that a sample was taken. According the the G&M article:

Much of the raw data collected by RAMP is kept private, deemed proprietary because of the industry funding. But even among its members, it has faced pressure to open up. Syncrude, which did much of the testing before RAMP’s inception, has called for data to be released, spokeswoman Cheryl Robb said.

In RAMP’s news section there is reference to an article indicating that they would make their database available to the public.  I could not find this database on their site and have sent them an email requesting to see it.  The email I recceived regarding this request is as follows:

Good morning Tracey,

Thank you for your e-mail.

As indicated by the media post you pointed out, the database will be available to the public by the end of the year and that is still our intention. Please check back next week.

Best regards,
Hailey
RAMP Communications

This is a classic lack of transparency situation and a seeming stacked deck leaning heavily toward meeting industry interests. It is very reminiscent of the Environment Canada refusal to share Mine Pollutant Data, a government agency supposedly overseeing the public interest not sharing key data.

This paper includes an awesome table (p.003) which outlines attributes related to research data sharing in academic health centres.  The table includes determinants of data access from the perspective of data storage, controls on access to data, and who determines access permissions.

The paper also includes 7 recommendations for Academic Health Centres (AHC) to encourage data sharing which I think can be modified to suit other contexts:

  1. Commit to sharing data as openly as possible, given privacy constraints.  Streamline institutional review boards, technology transfer, and information technology policies and procedures accordingly.
  2. Recognize data sharing contributions in hiring and promotion decisions, perhaps as a bonus to a publication’s impact factor.  Use concrete metrics when available. [I like that they understand the incentive structures of this group]
  3. Educate trainees and current investigators on responsible data sharing and reuse practices through class work, mentorship, and professional development.  Promote a framework for deciding upon appropriate data sharing mechanisms.
  4. Encourage data sharing practices as part of publication policies.  Lobby for explicit and enforceable policies in journal and conference instructions, to both authors and peer reviewers.
  5. Encourage data sharing plans as part of funding policies.  Lobby for appropriate data sharing requirements by funders, and recommend that they assess a proposal’s data sharing plans as part of its scientific contributions.
  6. Fund the cost of data sharing, support for repositories, adoption of sharing infrastructure and metrics, and research into best practices through federal grants and AHC funds.
  7. Publish experiences in data sharing to facilitate the exchange of best practices.

I have not looked at this literature in a while, but my sense is the discourse is moving away from problems to providing solutions.  Most importantly in the case of this paper, they are culture shifting since, in a sense they a pushing toward an open access ideology by creating an environment conducive to sharing by hiring the right people, providing the appropriate incentives, marketing successes, changing publication practices, educating and promoting open access within.  This is most interesting as this is the medical profession, a bastion of commerce and privacy concerns that is moving to open access faster than our Statistical Agency in Canada!

The full paper is available for free in myriad formats!

Piwowar HA, Becich MJ, Bilofsky H, Crowley RS, on behalf of the caBIG Data Sharing and Intellectual Capital Workspace (2008), Towards a Data Sharing Culture: Recommendations for Leadership from Academic Health Centers. PLoS Med 5(9): e183

The publisher, PLoS Medicine:

PLoS Medicine believes that medical research is an international public resource. The journal provides an open-access venue for important, peer-reviewed advances in all disciplines. With the ultimate aim of improving human health, we encourage research and comment that address the global burden of disease.

PLoS Medicine (eISSN 1549-1676; ISSN-1549-1277) is an open-access, peer-reviewed medical journal published monthly online by the Public Library of Science (PLoS), a nonprofit organization. The inaugural issue was published on 19 October 2004.

Today’s New York Times has a story on regional variation in the availability and cost of health care. The story is accompanied by a “multimedia interactive graphic” — that is, a Flash visualization that chartsvariables on a U.S. map …For each mapped variable, mousing over the displayed hospital referral regions yields the local, state, and national values for that variable.

It’s nicely done. There’s no question that, as of mid-2007, this is cutting-edge data interactivity for the mainstream. But times are changing fast. The Times sourced this data from the Dartmouth Atlas of Health Care. It took me five minutes to download the surgical data, upload it to Dabble DB, and publish a similar map along with a complete tabular dump.

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