If you are in distress, you can call or text 988 at any time. If it is an emergency, call 9-1-1 or go to your local emergency department.

8. Enhanced Data Sovereignty Standards

This domain of the framework adopts the CIHI (Canadian Institute for Health Information) minimum standard for collecting race-based and Indigenous identity data in health care. As that guidance document explains, while there are many benefits to collecting this variety of data, there are risks and barriers to assess and mitigate. To identify and address inequities in digital mental health care, prioritizing the safe and appropriate collection and use of this data will be essential (p. 5).[1] Appendixes A and B provide glossaries of the key concepts and relevant terminology used in this section.

[1] Canadian Institute for Health Information. (2022). Guidance on the use of standards for race-based and Indigenous identity data collection and health reporting in Canada. https://www.cihi.ca/en/race-based-and-indigenous-identity-data

Criteria

Criteria Origin

8a — Q1 Has the company specifically tasked a representative with considerations on data sovereignty? MHCC
8a — Q2 If not, does it consider data sovereignty when collecting ethnicity/race data? MHCC

 

Criteria

Criteria Origin

8b — Q1

Do you engage, listen, and act on the statements of ethnic minority communities and their members (including the most marginalized) regarding processing racial/ethnic data?

MHCC

8b — Q2

Can it show evidence of ongoing consultations with ethnic minorities throughout the development of the app?

Guidance:

Do they continue to listen (according to a schedule) after the initial planning stages?

MHCC

8b — Q3

Can the developer show evidence of techniques being used when collecting data (e.g., phone, face-to-face, group discussions)?

MHCC

8b — Q4

When collecting race-based data, do individuals give the company informed consent to use their data?

MHCC

8b — Q5

Can it show evidence of an explicit agreement not to share, sell, or otherwise use an individual’s race-based data for a new purpose?

MHCC

8b — Q6

Does it carefully process individual data while being vigilant not to harm minority communities?

MHCC

8b — Q7

Does it take accessibility into account?

Guidance:

Does the company consider various languages, formats, and individuals with disabilities when handling and sharing data?

MHCC

8b — Q8

Does it prioritize minority communities and their responses?

MHCC

8b — Q9

Has it set targets for addressing health inequities?

MHCC

8b — Q10

Does it have targets for progress monitoring?

MHCC

8b — Q11

Does the developer hold some accountability toward minority communities?

MHCC

8b — Q12

Can it show evidence of work being done to understand what communities look like in different areas?

MHCC

8b — Q13

Can individuals access their collective data and determine who else can access it (without any barriers)?

MHCC

8b — Q14

Is there evidence that capacity and infrastructure needs are being accounted for?

Guidance:

For example: facilitating training or teaching community members how to communicate using data, analyzing data, and connecting with required technology.

MHCC

8b — Q15

Does it allow external researchers or organizations access for the purpose of collecting new and current data?

MHCC

8b — Q16

Can it show evidence that all individuals’ rights and data — including identifiable, de-identified, and anonymized data — are protected?

MHCC

8b — Q17i

Have data collectors explained why they are asking for race-based data?

MHCC

8b — Q17ii

Have data collectors explained what the race-based data will be used for?

MHCC

8b — Q18

Have data collectors explained how race-based data will be stored?

MHCC

8b — Q19

Have data collectors explained who will have access to race-based data?

MHCC

8b — Q20

Is the individual’s right to informed consent and refusal protected from harm or damage with appropriate safety measures?

MHCC

8b — Q21

Has the developer clearly told individuals that providing data is not required to receive care and that refusal will not impact their quality of care?

MHCC

8b — Q22

Does the developer use additional protective measures when there is a high risk that an individual will be identified?

MHCC

8b — Q23

Can it show evidence of specific protection that focuses on preventing all data from being misused?

MHCC

 

Criteria

Criteria Origin

8c — Q1

Does the company collect and store data the same way for every community (including minority ethnic groups) — that is, as it would for an individual whose rights or data use is protected?

MHCC

8c — Q2

Do you identify First Nations in your data?

MHCC

8c — Q3

How are First Nations identified in its data collection?

MHCC

8c — Q4

Does the developer provide details on who owns the data?

MHCC

8c — Q5

Does it make data available under licence, so that its ownership and terms of use are clear?

MHCC

8c — Q6

How does the company establish ownership?

MHCC

8c — Q7

Does it document how consent is managed?

Guidance:

That is, how individuals consent to data usage and storage, and giving them the right to withdraw their consent.

MHCC

8c — Q8

Are First Nations given control over their people, communities, and representative bodies?

MHCC

8c — Q9

Do First Nations have control over how data is collected, used, and disclosed?

MHCC

8c — Q10

Are there any agreements in place regarding control over data?

MHCC

8c — Q11

What is the company’s decision-making process for the use of data?

MHCC

8c — Q12

Does it document data flow, outlining how it is transferred and used?

MHCC

8c — Q13

If yes, does the data flow documentation include what is done after it has been used for all intended purposes?

MHCC

8c — Q14

Does it provide First Nations with access to information and data about themselves and their communities, regardless of where they are held?

MHCC

8c — Q15

Does the company clearly state who has access to what data?

MHCC

8c — Q16

Is training/education provided to all those who have access to data?

MHCC

8c — Q17

What data access security/privacy policies and procedures are in place?

MHCC

8c — Q18

Does it clearly state that data will be held by a First Nation or a First Nation-controlled entity?

MHCC

8c — Q19

For any data not held by a First Nation or a First Nation-controlled entity, what is the explanation?

MHCC