---
title: "Unlock Health Records, Save Canadian Lives"
description: "Your medical history should be available instantly to you and any doctor that needs it, anywhere in Canada."
image: "https://yorkfactory.buildcanada.com/rails/active_storage/blobs/proxy/eyJfcmFpbHMiOnsiZGF0YSI6MTI5MCwicHVyIjoiYmxvYl9pZCJ9fQ==--d8668e47158688f19c3e1601a0b1e67a45fb7087/67a3799576e0eef15c8921ba_serbinis-seo-image.png"
author: "Michael Serbinis"
published: "2025-02-04T20:50:00.000Z"
canonical: "https://www.buildcanada.com/memos/unlock-health-records-save-canadian-lives"
---

# Unlock Health Records, Save Canadian Lives

## Key Messages

1. Your medical history should be available instantly to you and any doctor that needs it, anywhere in Canada.
2. Clear standards and connected health data allow patients to take control of their health and give our doctors and nurses the tools they need to save lives.
3. Provinces are wasting billions of dollars on electronic healthcare data and sharing schemes that don’t work. Connected health data can turn this waste into wealth.

### The Goal

Canada’s healthcare system is suffering from self-imposed barriers and lack of communication. We should require all healthcare providers across Canada standardise health records. This will save lives, reduce costs, and give every Canadian the safe, modern healthcare they deserve.

‍

### Summary

Imagine rushing your elderly mother to the emergency room at 2 AM. The doctor asks what medications she takes. You know there’s a long list, but in the stress of the moment, you can’t remember them all. Your mother’s family doctor has the list, but they’re closed. The hospital uses a different computer system and can’t see her records. The doctor has to make decisions without complete information.

Variations on this story happen every day across Canada. Our health information is stuck in different computer systems that don’t talk to each other, and even in paper files. Your family doctor, the hospital, your pharmacy, and your specialists each keep separate records. It’s as if your child’s teachers couldn’t share notes with each other - imagine if the math teacher couldn’t see what was happening in science class, the gym teacher had no idea about potential health issues, and the principal had to start from scratch understanding your child’s needs every time you met. We wouldn’t accept this disconnected approach in our children’s education - why do we accept it with our health?

‍

### The Problem

Our healthcare data systems are critically outdated. To give just one example, Ontario healthcare workers send 152 million faxes each year[1](https://www.cbc.ca/news/canada/toronto/ontario-fax-machines-health-care-1.6734810) and it’s been estimated almost 10% of these faxes end up in the wrong place[2](https://canadianhealthcarenetwork.ca/axe-the-fax-a-primer-on-fax-tech-in-the-21st-century-an-ontarios-healthcare-system-perspective). This broken system:

- Puts patients at risk when doctors don’t have complete information
- Wastes healthcare workers’ time hunting down records
- Regularly exposes patients private medical information to the wrong people
- Forces repeat tests because results aren’t shared
- Makes it harder to spot and stop disease outbreaks
- Costs Canadians over $2.1 billion each year in wasted time and resources[3](https://cpsa.ca/wp-content/uploads/2023/11/Interoperability-Saves-Lives-Final.pdf)

In 2024 the government introduced Bill C-72 to try and change this but this bill will never become law, and was inadequate anyway. It relied on voluntary provincial buy-in, which would create yet another patchwork of varying regulations.

‍

### The Solution

We need to create a system where:

1. Your health information follows you wherever you get care
2. Doctors can quickly see your relevant medical history
3. You can easily access and control your own health records
4. These changes are implemented everywhere in Canada

Think of it like your banking - you can use your debit card at any ATM across Canada because banks have secure ways to share information. We need the same for healthcare.

‍

### Why This Matters

These changes are urgently needed:

**This Technology Exists Today.** The solutions are simple. We don’t need to invent anything new, just set standards and improve coordination. Estonia has been running a similar system successfully for over a decade and the standards for healthcare data already exist.

**Canadians Want This.** 80% of Canadians want easy online access to their health records, but only 50% have any kind of access today[4](https://competition-bureau.canada.ca/unlocking-power-health-data),[5](https://www.statcan.gc.ca/o1/en/plus/5456-just-over-half-canadians-report-accessing-electronic-health-information-past-12-months).

**Every Day We Wait Costs Lives.** The COVID-19 pandemic showed how dangerous our fragmented health data system is.

If we do this right we can create the most advanced and effective healthcare system in the world giving Canadians more access and control over their data while empowering our healthcare professionals to provide the highest standard of care possible.

‍

### What It Will Take

To create this system will require new legislation, financial mechanisms to help healthcare providers make the transition, and new Federal digital infrastructure efforts. There will be a small lift but taken together these changes will save us $2.1 billion every year by:

- Reducing duplicate tests
- Preventing medical errors
- Making healthcare more efficient
- Saving patients time

‍

### What Needs To Be Done

#### Step 1: Change the Rules (First 6 Months)

- Update the Canada Health Act, and the Canada Health Transfer agreements as well as introduce new legislation to require healthcare providers to standardise and share records
- Create clear national rules for how to share health information securely while respecting patients privacy and giving Canadians control over their health data
- Start test projects in provinces to confirm the best way to implement the rollout

Key technical detail: We’ll establish the Health Data Standards Authority to oversee national health data sharing standards like HL7 FHIR (a common language for healthcare systems to communicate).

‍

#### Step 2: Build the System (6-18 Months)

- Create the secure networks needed to share information
- Help doctors’ offices and hospitals connect their systems
- Train healthcare workers on the new system

Technical detail: We’ll implement standardized APIs (secure connection points) that let different healthcare computer systems share information safely, with industry standards for health data.

‍

#### Step 3: Connect Everything (18-36 Months)

- Link all major healthcare providers across Canada
- Provide secure access to your health records records through a new Federal online portal and through commonly available mobile devices (Android, iPhone)

‍

## Common Questions

**Will my healthcare data be safe?** The current scattered system actually creates more privacy risks than a well-designed connected system[6](https://policyoptions.irpp.org/magazines/may-2021/whats-preventing-canada-from-creating-a-robust-health-data-infrastructure/). Estonia has proven that this kind of system can better protect your information and give you more control[7](https://rm.coe.int/inf-2022-17-guide-health-literacy/1680a9cb75).

**Will the provinces still run healthcare?** Provinces will still run their healthcare systems but will use common standards to share information. Federal funding will help with costs.

**Will this system cost more?** Estonia’s experience shows the initial investment pays for itself through better care and less waste[8](https://opensourcehealthcare.org/articles/national-digital-healthcare-estonia). We can learn from their success.

Think back to that emergency room at 2 AM. Now imagine the doctor can instantly see your mother’s complete medical history - every medication, allergy, and condition. That’s not just convenient - it could save her life. This is about making our healthcare system work better for everyone. Other countries have proven this works. It’s time for Canada to act.

‍

## Appendix

**Canada Health Act (R.S.C., 1985, c. C-6)**

- **Relevant Sections:**

  1. _Section 7_ (Conditions for payment of cash contributions)
  2. _Section 12_ (Penalty for non-compliance)

- **Terms Needing Change:**

  1. Currently, the Act does **not** explicitly include digital data-sharing or interoperability as a condition for Canada Health Transfer payments.
  2. We need to **add** wording that ties federal funding to mandatory adoption of data exchange standards and data portability rights.

- **Proposed Amendments (Sample Language):**

  1. _Amend Section 7(1)_ to include:\
     “As a condition for receiving the full federal cash contribution, each province shall adopt and implement nationally recognized health data interoperability standards, including HL7 FHIR.”
  2. _Add a new Section 7(3)_:\
     “Every province must ensure patient access to, and portability of, personal health records in digital format. Provinces not meeting these requirements may have their federal contributions reduced as set out in Section 12.”
  3. _Amend Section 12(1)_ to include:\
     “If the Minister determines that a province has failed to comply with Section 7(1) or 7(3), the Minister may reduce or withhold the cash contribution to that province as deemed appropriate.”

**Personal Information Protection and Electronic Documents Act (PIPEDA) (S.C. 2000, c. 5)**

- **Relevant Parts:**

  1. _Part 1_ (Protection of Personal Information in the Private Sector)
  2. _Schedule 1_ (Model Code for the Protection of Personal Information)

- **Terms Needing Change:**

  1. The current language focuses on consent and privacy but does not specifically guarantee a “right to portable electronic health data.”
  2. We must clarify how health data portability fits within “consent” and “purpose of collection” rules.

- **Proposed Amendments (Sample Language):**

  1. _Add to Section 7(1)_:\
     “Despite paragraph (b), organizations that collect, use, or disclose personal health information shall, upon patient request, provide standardized electronic records in compliance with national interoperability standards.”
  2. _Update Schedule 1, Principle 9 (Individual Access)_:\
     “Individuals shall have a right to obtain their personal health data in a portable, interoperable format without unreasonable delay, consistent with nationally recognized standards.”

**Privacy Act (R.S.C., 1985, c. P-21)**

- **Relevant Sections:**

  1. _Section 3_ (Definition of personal information)
  2. _Sections 7-8_ (Collection, retention, disclosure of personal information)

- **Terms Needing Change:**

  1. The Act covers federal institutions’ handling of personal information but does not detail responsibilities for sharing healthcare data with provincial/territorial systems.

- **Proposed Amendments (Sample Language):**

  1. _Add a new Section 8.1_:\
     “Federal government institutions involved in healthcare funding, coordination, or oversight shall share personal health information with authorized provincial or territorial bodies solely for the purpose of improving patient care and system interoperability, in accordance with robust security and privacy safeguards.”

**New Federal Legislation: “Health Data Portability and Interoperability Act”**

- **Purpose:**

  1. Establish a clear legal framework for nationwide data-sharing in healthcare.
  2. Define the powers of a new oversight body (e.g., _Health Data Standards Authority_).
  3. Enforce HL7 FHIR compliance and support provinces in phasing out paper-based and fax-dependent systems.

- **Key Elements:**

  1. **Scope and Application:** Applies to all healthcare providers receiving federal funding.
  2. **Interoperability Standards:** Mandates HL7 FHIR, provides API standards, and sets deadlines for compliance.
  3. **Data Repository Tiers:** Outlines national, provincial, and individual-level data repository requirements.
  4. **Mandatory Reporting:** Requires digital submission of health data and penalizes non-compliance.
  5. **Oversight and Enforcement:** Creates an independent agency with authority to audit, enforce standards, and manage penalties for violations.
  6. **Patient Rights:** Ensures patients can access, transfer, and correct their health data in real time.
  7. **Security Requirements:** Sets minimum encryption, authentication, and breach notification rules.

**Provincial-Federal Interactions**

- **Constitutional Context:**

  - Healthcare is largely a provincial responsibility under the Constitution.
  - The federal government exerts influence primarily through funding agreements (e.g., Canada Health Transfer).

- **Mechanism for Change:**

  - By **tying federal funds** to interoperability standards, the federal government can encourage provinces to adopt these reforms without overstepping constitutional bounds.
  - Provinces retain operational control but must meet national data-sharing rules to avoid funding penalties.

- **Coordination with Provincial Privacy Laws:**

  - Provinces have their own health information laws (e.g., Ontario’s PHIPA). Federal rules must align with or supersede these where possible.
  - Harmonized privacy and data exchange rules reduce legal uncertainty and smooth the path to a unified digital system.

**In Summary:**

- **Canada Health Act** changes tie health transfers to digital data-sharing.
- **PIPEDA** updates embed patients’ right to data portability in private healthcare settings.
- **Privacy Act** amendments allow secure data exchange between federal and provincial bodies.
- A **new federal Act** establishes an oversight body, enforces interoperability standards (HL7 FHIR), and ensures patient rights.

**Provinces** retain healthcare delivery roles but must follow federally mandated standards in return for funding.

## Supporters

[Daniel Debow](https://x.com/ddebow), [Wayne Pommen](https://www.linkedin.com/in/wayne-pommen-8844021/)

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