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Pan-Canadian Health Data Content Framework — Data Content Standard, Version 2, September 2025

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Suggestion
For Person Information should there also be a data element to address disability needs (e.g., companion animal, wheelchair). Tyler James may be someone to reach out to for this as his research is focused on this: link
Suggestion
Not sure if this belongs here, but also considerations for sign language and for people who use a communication device.
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May also want to add one specific for transportation to healthcare appointments.
Suggestion
Some points to consider as this data element develops. It can be difficult for people to know how to interpret this question (e.g., before or after taxes). Will they be able to calculate this (e.g., they may have multiple jobs). Will they be comfortable asking each of the household members about their income. Also may want to look at Figure 2 in my recent paper for all the ways income-related questions can be asked: link
Suggestion
Financial insecurity can be a very challenging area for identifying people in need. For example someone may not see themselves as being financially insecure, but may have developed strategies around affordability issues that is prevent access to healthcare. COST-FACIT is a validated survey that gets at this: link Although it has been developed for cancer care, it has tested in diabetes care: link
Suggestion
Should an element about completing income tax forms in the past year also be added? As this can be helpful to linking people to needed resources.
Suggestion
Less than high school can convey insufficiency. Suggest 'Some high school'. Also suggest adding 'some college.'
in reply to Marcy's comment
Suggestion
Here is q validated survey to look at that gets at more of the reasons why someone may not follow their prescription: link
Suggestion
There is also the reliability of the internet - people may be able to afford it but live in an area with poor internet infrastructure.
Suggestion
Pets and companion animals are also a key social support: link to consider. In my work, people who lived alone also expressed concern about what would happen to their pet if they were unexpectedly hospitalized.
Question
Should "did not arrive" be included to help track "no-shows".
Patient portal message, secure text message, telehealth visit may be other ones to add.
Question
Should power of attorney also be here? Or perhaps this is another data element.
Suggestion
Suggest using a different term for informal caregiver as "informal" can diminish the role of caregivers. This article suggests 'family and friend caregiver,' but I don't think it represents the breadth of people who may be involved. link
"Family and friend caregivers, care partners, partners in care, care advocates, or simply caregiver" are suggested by this article:link
Suggestion
Suggest adding someone people who "may be living in transitional housing; couch-surfing or living in overcrowded/’doubled up’ conditions in someone else’s home; living day-today or week-to-week in motels or hostels; or living in another type of provisional accommodation". See: link
Suggestion
Need to add a question about how many people are living in the household.
Suggestion
Dr. Lynette Gerido may be someone to connect with about family relationships, as she has looked at this in her prior research. link
Suggestion
Suggestions for future iterations - may want to add in more reasons from the patient perspective than refusal. (e.g., costs, side effects).
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Same suggestion as previously - may want to separate this out into spoken and written language.
Suggestion
May want to consider separating this out into written and spoken language.
Suggestion
May want to check with the partners if stakeholders is a term they would want to use. See: link
Suggestion
Suggest removing collection of “units of measure” and set a data standard – this will minimize challenges with data quality and comparability.
Suggestion
In addition to asking for their current job status and total household income, recommend also asking for individual’s income. Understanding if the individual earns all of the household income vs none, vs partial, is an important aspect to understand their financial responsibility, access to funds, etc.
Suggest including option for self-selection of the vaccine outside of routine and high-risk categorization
Suggestion
Suggest additional metrics to understand specifics about attachment and account for unattached or previously attached patients.
Suggestion
Consider adding another section under Health Status, such as “General Symptoms” that collects the patient’s symptoms at visit to be able to manage patient’s symptoms more effectively. The intended outcome is to help patients communicate the impact of cancer and treatments on their health status and quality of life. The assessment tool provides a clinical profile of symptom severity over time and establishes a context for understanding symptoms for holistic clinical assessment.
Suggestion
Organization size can be an important variable to have.
Suggestion
This could be clarified as to whether it is the specialty they did their training in or the specialty they practice in, since sometimes differs, especially for family doctors (e.g., focused practice).
Suggestion
If someone is not looking for work then they are not technically unemployed and are out of the labour force. To match your interest there should likely be two levels - 1) not in the labour force - on disability; 2) not in the labour force - other reason.
Suggestion
I think the top categories are too low since the median income is almost 70K so two individuals both making the median would almost be in the top category.
Suggestion
What about adding levels for occasional/daily use OR low vs. high use?
Suggestion
I suggest the social support variable being based on perceived support rather than actual support received. The latter is endogenous in most cases (i.e., individuals receive support when they are already in poor health or in challenging situations) so actual support is often not found to be a protective factor and has a different conceptual interpretation compared to perceived support which is usually a protective factor.
Suggestion
There is a household composition variable but you cannot determine the household size from it it in many cases. I think a household size variable should be added because without it, it is harder to properly use the household income variable since some form of household size adjustment/equivalization is required.
Suggestion
If measuring housing stability separately, it may be more informative to leave housing out of this variable and make it stability in other domains (and the user can create a composite of the 2 variables for the overal variable).
Suggestion
What about country of birth? That is important for researchers.
Suggestion
What does this mean (i.e., validity, completeness, etc.)?
Suggestion
Health-related quality of life data would be very beneficial to have as a researcher.
Suggestion
It might be good to clarify what connected care means.
The Health Concerns section is great. It moves away from the traditional “Problem List / Diagnosis List” model and instead adopts a broader, more patient-centred concept of Health Concern.
Suggestion
Do we need something like "Drug Interaction Flag"? Add binary flag with reference to interacting medication (pointer to Medication* ID) and severity (e.g., SNOMED 67010001 | Drug interaction.
Prevents errors; integrates with decision support tools like PrescribeIT.
Suggestion
Optional but Use Health Canada Controlled Drugs and Substances Act codes; add Schedule Level (e.g., I–VIII).
Suggestion
Add Category (HL7 EventType codes: "Adverse Reaction," "Near Miss") and Severity (SNOMED: 272141005 | Severity finding |).
Suggestion
Expand value set with SNOMED CT CA (e.g., 182898003 | Reason not given | subtypes like "Patient non-compliance"). Add Adherence Score (e.g., Proportion of Days Covered, fixed LOINC codes)
Suggestion
Expand value set with SNOMED CT CA (e.g., 182898003 | Reason not given | subtypes like "Patient non-compliance"). Add Adherence Score (e.g., Proportion of Days Covered, fixed LOINC codes)
Suggestion
Develop value sets from SNOMED CT CA (e.g., 385055001 | Dosage form | for forms like "extended-release tablet"). Include examples: Ordered, Calculated (BSA-adjusted)
Suggestion
Develop value sets from SNOMED CT CA (e.g., 385055001 | Dosage form | for forms like "extended-release tablet"). Include examples: Ordered, Calculated (BSA-adjusted)
Suggestion
Prioritize these enhancements for Version 3, focusing on maturity elevation and FHIR alignment
Suggestion
test
Suggestion
Thank you for the opportunity to review this important standard. I really like the format, the ability to see and boost others' comments. There are many data elements that are under development and lots that will need some educational supports. Lots of work to do!
Suggestion
Is there consistent use or definition of the terms client/patient/resident and the rationale? In general, client is the language used in community, patient in acute and ambulatory, and resident in LTC. All of these are healthcare consumers. There is some variation in these terms that should be addressed in an informative structure such as this.