Recommendations for Health Care Providers & Authorities collecting Indigenous identity - PowerPoint Presentation

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Recommendations for Health Care Providers & Authorities collecting Indigenous identity data

October 2021

IndigenousHealth@cihi.ca

For feedback

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Christi Belcourt, Reverence for Life • Acrylic on Canvas, 2013 • Collection of the

Wabano

Centre for Aboriginal Health

Land acknowledgement

As CIHI works toward better health for all people in Canada, we acknowledge that we live and work on the traditional territories of First Nations, Inuit and Métis Peoples. Our work is grounded in cultural safety and humility, respectful engagement, and Indigenous-driven processes and partnerships.

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Objectives

Share CIHI’s proposed race-based and Indigenous identity Standards for health care

Share proposed guidelines for health care providers that will accompany the Standards

Request your feedback on the Standards and Guidelines

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Outline

Canadian Institute for Health Information (CIHI) OverviewObjectives

Proposed race-based and Indigenous Identity Standard for Health Care Guidelines for Health Care Providers and Authorities Key questions

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Canadian Institute for Health Information

Independent, not-for-profit organization that provides essential information on Canada’s health systems.

Established in 1994 through an agreement between the federal, provincial and territorial governments. Board of Directors, with representation from federal, provincial and territorial governments and health care scholars, experts.

Comparable, actionable data and information to improve health care

28+ Health system databases

Data collection standards (for comparability)

Reports and analyses to support decisions

Protection of privacy and confidentiality

Committed to cultural safety and humility and respecting Indigenous data governance including OCAP (more info

here

).

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Proposed race-based and Indigenous identity Standards for health care

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CIHI National Data Standards

CIHI develops and maintains health data Standards to ensure quality and comparability across jurisdictions and health service providers (e.g.

documentation of diagnoses and interventions ICD-10 Standards/CCI).

Longstanding calls for Indigenous-specific and race-based data data grew louder during the pandemic.

In July 2020, CIHI proposed

Standards

for the collection of race-based and Indigenous-identity data in health care in ways that are safe and respect the principles of Indigenous data sovereignty .

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Purpose of race-based and Indigenous identity Standards

The purpose of the Standards is to identify, monitor and address inequities that stem from bias and racism (including systemic racism in health systems).

Racism has consequences for health care access, quality and outcomes impacting health and well-being.

Standards help ensure harmonized collection and comparability for measurement and reporting.

Race-based and Indigenous-identifiable data can help identify problems, inform policy and be a tool to promote health equity.

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Proposed Standard for Indigenous identity data

In July 2020, CIHI

proposed the

minimum

standards

for race-based and Indigenous identity data to help facilitate comparisons

Proposed Indigenous identity Standard:

Is distinctions-based

Allows for self-identification

Is aligned with other standards, such as Census, BC admin data standard, provincial COVID case report forms (e.g. BC, NL, NS), ON Antiracism Directorate

Is its own separate question but is collected alongside the race-based Standard

While CIHI’s work focuses on national harmonization it is clear that ; local engagement, customization and data governance agreements are crucial

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Proposed Standard for Indigenous identity data

Proposed Indigenous

Identity Q

uestion*

Do you identify as First Nations, Métis and/or Inuk/Inuit?

Proposed response categories (select all that apply)

Yes, First Nations

Yes, Métis

Yes, Inuk/Inuit

No

Prefer not to answer

Minimum Standard (CIHI)

Option to provide more detail (examples)

Métis

Are you a registered member of a Métis organization or Settlement?

Yes -- Specify organization or Settlement: (open-text)

No

Inuk/Inuit

Are you enrolled under, or a beneficiary of, an Inuit land claims agreement?

Yes -- Specify agreement: (open-text)

No

First Nations

Status Non-status

On reserve Off reserve

Is this person a member of a First Nation or Indian band?

If "Yes", which First Nation or Indian band?

Minimum Standard:

Data governance agreements and local customization through appropriate engagement with Indigenous communities in each jurisdiction

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CIHI’s proposed Standard for race-based data

Source:

Proposed Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada.

Collected alongside the proposed Standard for Indigenous identity data

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Proposed guidelines for Health Care Providers and Authorities

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Proposed guidelines for Health Care Providers and Authorities

The collection and use of Indigenous identity by mainstream health care providers and authorities should, among other things, involve:

Engagement

: Appropriate local engagement should happen at all stages

Data governance

agreements, including data sharing agreements and protocols should be established with First Nations, Inuit and/or Métis authorities, as appropriate

Safe collection of data

: Care and processes are required to ensure that information is collected in ways that are culturally safe and do not cause harm

Based on our engagement to date, here is what we’ve heard on the

safe collection and appropriate use of Indigenous-identifiable data

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What we’ve heard: Engagement

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Proposed guidelines: Engagement with First Nations, Inuit and Métis

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What we’ve heard: Data Governance

"Data Governance is the exercise of authority and control (planning, monitoring, and enforcement) over the management of data assets.” - DAMA International

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Data governance: Guiding principles

First Nations, Inuit and Métis have the right to freely determine their political status and freely pursue their economic, social and cultural development (self-determination).

Data and information about individual and community health and wellness are critical tools for self-determination.

Indigenous data sovereignty principles assert that First Nations, Inuit and Métis have collective sovereign rights and the fundamental authority to own and govern their data, regardless of where their data is housed (e.g. principles of OCAP: Ownership, Control, Access and Possession).

Partnerships with Indigenous organizations are foundational to the appropriate use of data. For health data to become a source of empowerment, Indigenous communities should be involved in conceptualizing, implementing, collecting, analyzing, reporting and disseminating their data.

There is no one size fits all solution, each to be shaped by the engagement and communities involved.

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Various organizations have developed agreements for the governance of Indigenous data. For example:

CIHI’s

policy

ensures that approvals from appropriate Indigenous authorities are received before releasing data externally

.

The Chiefs of Ontario and others establish data sharing agreements with the

Institute for Clinical and Evaluative Sciences (ICES).First Nations Health and Social Services Secretariat of Manitoba (FNHSSM) established agreements with Manitoba Health and Manitoba Centre for Health Policy

Data governance policies

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What we’ve heard: Safe collection of data

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Proposed guidelines: Safe collection of Indigenous-identifiable data

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Key considerations for health care providers and authorities (examples)

Have you engaged your local First Nations, Inuit and Métis authorities throughout the process?

Where will the data be housed? Do you have approvals from appropriate Indigenous authorities to collect this data?

How will Indigenous authorities be involved with the management of their data?

How will the data be protected? What safeguards are in place to ensure appropriate use?

How do you plan on safely collecting data and information on race and Indigenous-identity? Is your staff adequately trained?

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Questions for your consideration

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Questions for your consideration

What are your thoughts on the Indigenous Identity data collection Standard (Slide 10)? Do you have any concerns, advice or questions?

What are your thoughts about the data collection guidelines (Engagement, Data Governance, Safe Collection) that CIHI plans to share with health care providers and authorities to accompany the Standard? What have we missed? What should be emphasized?

Do you have any other feedback or advice?

We want to hear from you:

IndigenousHealth@cihi.ca

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@

cihi_icis

IndigenousHealth@cihi.ca